Dépouillements

Neurodiversity and community-led rights-based movements: Barriers and opportunities for global research partnerships / Yulin CHENG in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.573-577 Titre : Neurodiversity and community-led rights-based movements: Barriers and opportunities for global research partnerships Type de document : Texte imprimé et/ou numérique Auteurs : Yulin CHENG, Auteur ; Bethlehem TEKOLA, Auteur ; Anand BALASUBRAMANIAN, Auteur ; Laura CRANE, Auteur ; Kathy LEADBITTER, Auteur Article en page(s) : p.573-577 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : https://doi.org/10.1177/13623613231159165 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Neurodiversity and community-led rights-based movements: Barriers and opportunities for global research partnerships [Texte imprimé et/ou numérique] / Yulin CHENG, Auteur ; Bethlehem TEKOLA, Auteur ; Anand BALASUBRAMANIAN, Auteur ; Laura CRANE, Auteur ; Kathy LEADBITTER, Auteur . - p.573-577. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.573-577 Index. décimale : PER Périodiques En ligne : https://doi.org/10.1177/13623613231159165 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Integrating autistic perspectives into autism science: A role for autistic autobiographies / Janette DINISHAK in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.578-587 Titre : Integrating autistic perspectives into autism science: A role for autistic autobiographies Type de document : Texte imprimé et/ou numérique Auteurs : Janette DINISHAK, Auteur ; Nameera AKHTAR, Auteur Article en page(s) : p.578-587 Langues : Anglais (eng) Mots-clés : autism science reform,autism,autistic perspectives,epistemic justice,first-person accounts Index. décimale : PER Périodiques Résumé : Autism science faces several conceptual and ethical challenges. These include fundamental issues such as how to characterize autism and the fact that research findings and how they are interpreted sometimes contribute to negative perceptions of autistic people. We argue that some of these challenges can be addressed by centering the perspectives of autistic people and focus on one way to accomplish this: having non-autistic researchers critically engage with personal accounts of autistic experience. We discuss some of the advantages and challenges of engaging with these accounts and argue that they can play a role in the reform of autism science.Lay abstractAutism science faces challenges in how to think about autism and what questions to focus on, and sometimes contributes to stigma against autistic people. We examine one way that non-autistic researchers may start to combat these challenges: by reading and reflecting on autistic people?s descriptions of their personal experiences (e.g. autobiographies) of what it is like to be autistic. In this article, we review some of the advantages and challenges of this approach and how it may help combat some of the challenges currently facing autism science by focusing studies on the questions autistic people find most important, counteracting stereotypes, and increasing understanding of autistic experiences. En ligne : https://doi.org/10.1177/13623613221123731 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Integrating autistic perspectives into autism science: A role for autistic autobiographies [Texte imprimé et/ou numérique] / Janette DINISHAK, Auteur ; Nameera AKHTAR, Auteur . - p.578-587. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.578-587 Mots-clés : autism science reform,autism,autistic perspectives,epistemic justice,first-person accounts Index. décimale : PER Périodiques Résumé : Autism science faces several conceptual and ethical challenges. These include fundamental issues such as how to characterize autism and the fact that research findings and how they are interpreted sometimes contribute to negative perceptions of autistic people. We argue that some of these challenges can be addressed by centering the perspectives of autistic people and focus on one way to accomplish this: having non-autistic researchers critically engage with personal accounts of autistic experience. We discuss some of the advantages and challenges of engaging with these accounts and argue that they can play a role in the reform of autism science.Lay abstractAutism science faces challenges in how to think about autism and what questions to focus on, and sometimes contributes to stigma against autistic people. We examine one way that non-autistic researchers may start to combat these challenges: by reading and reflecting on autistic people?s descriptions of their personal experiences (e.g. autobiographies) of what it is like to be autistic. In this article, we review some of the advantages and challenges of this approach and how it may help combat some of the challenges currently facing autism science by focusing studies on the questions autistic people find most important, counteracting stereotypes, and increasing understanding of autistic experiences. En ligne : https://doi.org/10.1177/13623613221123731 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Barriers and facilitators for obtaining support services among underserved families with an autistic child: A systematic qualitative review / Carla WALLACE-WATKIN in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.588-601 Titre : Barriers and facilitators for obtaining support services among underserved families with an autistic child: A systematic qualitative review Type de document : Texte imprimé et/ou numérique Auteurs : Carla WALLACE-WATKIN, Auteur ; Jeff SIGAFOOS, Auteur ; Hannah WADDINGTON, Auteur Article en page(s) : p.588-601 Langues : Anglais (eng) Mots-clés : barriers,facilitators,parent perspectives,support services,systematic review,underserved families Index. décimale : PER Périodiques Résumé : Families of autistic children from underserved populations participate in support services at lower rates than other families. To better understand possible reasons for this inequity, we reviewed qualitative studies examining parent-reported barriers and facilitators to accessing and participating in support services. A systematic search identified 18 articles that met inclusion criteria. Resulting thematic analysis located three themes: (a) support service accessibility, (b) diversity of support services, and (c) community. Parents reported that financial pressures, geographic location, and service flexibility influenced their ability to obtain support services. Implications for service delivery and areas for future research are discussed.Lay abstractFamilies from underrepresented ethnic or racial groups and those with limited financial resources could experience more difficulty in accessing support services for their autistic child due to certain types of barriers. We searched academic journals, websites, and other sources for studies which looked at what barriers might be present for such families and what might help families access support services for their autistic child. The search found 18 studies. Results from each study were examined and coded into themes. Parents reported that accessibility, diversity of support services, and stigma influenced their experiences with support services. We discuss what these findings might mean for future research and for service delivery. En ligne : https://doi.org/10.1177/13623613221123712 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Barriers and facilitators for obtaining support services among underserved families with an autistic child: A systematic qualitative review [Texte imprimé et/ou numérique] / Carla WALLACE-WATKIN, Auteur ; Jeff SIGAFOOS, Auteur ; Hannah WADDINGTON, Auteur . - p.588-601. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.588-601 Mots-clés : barriers,facilitators,parent perspectives,support services,systematic review,underserved families Index. décimale : PER Périodiques Résumé : Families of autistic children from underserved populations participate in support services at lower rates than other families. To better understand possible reasons for this inequity, we reviewed qualitative studies examining parent-reported barriers and facilitators to accessing and participating in support services. A systematic search identified 18 articles that met inclusion criteria. Resulting thematic analysis located three themes: (a) support service accessibility, (b) diversity of support services, and (c) community. Parents reported that financial pressures, geographic location, and service flexibility influenced their ability to obtain support services. Implications for service delivery and areas for future research are discussed.Lay abstractFamilies from underrepresented ethnic or racial groups and those with limited financial resources could experience more difficulty in accessing support services for their autistic child due to certain types of barriers. We searched academic journals, websites, and other sources for studies which looked at what barriers might be present for such families and what might help families access support services for their autistic child. The search found 18 studies. Results from each study were examined and coded into themes. Parents reported that accessibility, diversity of support services, and stigma influenced their experiences with support services. We discuss what these findings might mean for future research and for service delivery. En ligne : https://doi.org/10.1177/13623613221123712 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Alexithymia and intolerance of uncertainty predict somatic symptoms in autistic and non-autistic adults / Fionnuala LARKIN in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.602-615 Titre : Alexithymia and intolerance of uncertainty predict somatic symptoms in autistic and non-autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Fionnuala LARKIN, Auteur ; Brianna RALSTON, Auteur ; Sophie Jayne DINSDALE, Auteur ; Sakura KIMURA, Auteur ; Marianna Emma HAYIOU-THOMAS, Auteur Article en page(s) : p.602-615 Langues : Anglais (eng) Mots-clés : alexithymia,autism,interoception,intolerance of uncertainty,somatic symptoms Index. décimale : PER Périodiques Résumé : Autistic people experience heightened rates of physical health problems but may also experience elevated levels of somatic symptoms (e.g. pain, headache, gastrointestinal symptoms) due to psychological factors which are common in autism. This online study sought to compare rates of somatic symptoms (Patient Health Questionnaire-15) in older adolescents and adults who were autistic (n=51), non-autistic (n=119) and who suspected they were autistic (n=32), while controlling for health conditions. We investigated psychological risk factors that may predispose individuals to experience somatic symptoms, including alexithymia (General Alexithymia Factor Score), interoception (Body Awareness Questionnaire) and intolerance of uncertainty (Intolerance of Uncertainty Scale). Diagnosed autistic individuals had higher rates of alexithymia and intolerance of uncertainty. We also found higher somatic symptoms in diagnosed autistic individuals, controlling for mental and physical health. However, hierarchical regression showed that somatic symptoms were predicted by physical and mental health conditions, female gender, alexithymia, and intolerance of uncertainty, regardless of autism status. The results suggest that autistic and non-autistic individuals experience more bodily discomfort in part due to gender, physical and mental health, alexithymia, and difficulty tolerating uncertainty. Implications for mental and physical health care in autism are discussed.Lay abstractAutistic people have more physical health problems than non-autistic people. We were interested in whether autistic people experience more discomfort in their bodies than non-autistic people and whether certain psychological traits contribute to that. A survey was completed online by older adolescents and adults, 51 of whom were autistic, 32 of whom thought they might be autistic but were not diagnosed and 119 who were not autistic. They completed measures of somatic symptoms (daily experience of pain, discomfort, dizziness), alexithymia (difficulty identifying and expressing feelings), interoception (how much people are aware of their bodies) and intolerance of uncertainty (how people handle doubt or uncertainty), and reported any physical or mental health conditions. We found that the autistic participants had more physical and mental health conditions than the non-autistic participants, but even when we took account of this, they experienced higher levels of somatic symptoms. We looked at which psychological factors influenced levels of somatic symptoms across the whole sample, and found that alexithymia, intolerance of uncertainty, having physical health problems, being female and the number of mental health conditions predicted somatic symptoms, while interoception and autism diagnosis did not. The findings suggest that people may be more likely to experience physical discomfort if they are female, and have difficulty identifying and expressing feeling and difficulty tolerating doubt. As these psychological factors are more prominent in autism, we think this is important for physical and mental health providers to know about, so that these psychological factors can be considered when assessing and treating autistic people. En ligne : https://doi.org/10.1177/13623613221109717 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Alexithymia and intolerance of uncertainty predict somatic symptoms in autistic and non-autistic adults [Texte imprimé et/ou numérique] / Fionnuala LARKIN, Auteur ; Brianna RALSTON, Auteur ; Sophie Jayne DINSDALE, Auteur ; Sakura KIMURA, Auteur ; Marianna Emma HAYIOU-THOMAS, Auteur . - p.602-615. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.602-615 Mots-clés : alexithymia,autism,interoception,intolerance of uncertainty,somatic symptoms Index. décimale : PER Périodiques Résumé : Autistic people experience heightened rates of physical health problems but may also experience elevated levels of somatic symptoms (e.g. pain, headache, gastrointestinal symptoms) due to psychological factors which are common in autism. This online study sought to compare rates of somatic symptoms (Patient Health Questionnaire-15) in older adolescents and adults who were autistic (n=51), non-autistic (n=119) and who suspected they were autistic (n=32), while controlling for health conditions. We investigated psychological risk factors that may predispose individuals to experience somatic symptoms, including alexithymia (General Alexithymia Factor Score), interoception (Body Awareness Questionnaire) and intolerance of uncertainty (Intolerance of Uncertainty Scale). Diagnosed autistic individuals had higher rates of alexithymia and intolerance of uncertainty. We also found higher somatic symptoms in diagnosed autistic individuals, controlling for mental and physical health. However, hierarchical regression showed that somatic symptoms were predicted by physical and mental health conditions, female gender, alexithymia, and intolerance of uncertainty, regardless of autism status. The results suggest that autistic and non-autistic individuals experience more bodily discomfort in part due to gender, physical and mental health, alexithymia, and difficulty tolerating uncertainty. Implications for mental and physical health care in autism are discussed.Lay abstractAutistic people have more physical health problems than non-autistic people. We were interested in whether autistic people experience more discomfort in their bodies than non-autistic people and whether certain psychological traits contribute to that. A survey was completed online by older adolescents and adults, 51 of whom were autistic, 32 of whom thought they might be autistic but were not diagnosed and 119 who were not autistic. They completed measures of somatic symptoms (daily experience of pain, discomfort, dizziness), alexithymia (difficulty identifying and expressing feelings), interoception (how much people are aware of their bodies) and intolerance of uncertainty (how people handle doubt or uncertainty), and reported any physical or mental health conditions. We found that the autistic participants had more physical and mental health conditions than the non-autistic participants, but even when we took account of this, they experienced higher levels of somatic symptoms. We looked at which psychological factors influenced levels of somatic symptoms across the whole sample, and found that alexithymia, intolerance of uncertainty, having physical health problems, being female and the number of mental health conditions predicted somatic symptoms, while interoception and autism diagnosis did not. The findings suggest that people may be more likely to experience physical discomfort if they are female, and have difficulty identifying and expressing feeling and difficulty tolerating doubt. As these psychological factors are more prominent in autism, we think this is important for physical and mental health providers to know about, so that these psychological factors can be considered when assessing and treating autistic people. En ligne : https://doi.org/10.1177/13623613221109717 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Leveraging technology to make parent training more accessible: Randomized trial of in-person versus online executive function training for parents of autistic children / Lauren KENWORTHY in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.616-628 Titre : Leveraging technology to make parent training more accessible: Randomized trial of in-person versus online executive function training for parents of autistic children Type de document : Texte imprimé et/ou numérique Auteurs : Lauren KENWORTHY, Auteur ; Deb CHILDRESS, Auteur ; Anna Chelsea ARMOUR, Auteur ; Alyssa VERBALIS, Auteur ; Anqing ZHANG, Auteur ; Mary TROXEL, Auteur ; Rebecca HANDSMAN, Auteur ; Kelly KOCHER, Auteur ; Yetta MYRICK, Auteur ; Monica WERNER, Auteur ; Katie C ALEXANDER, Auteur ; Lynn CANNON, Auteur ; Laura G. ANTHONY, Auteur Article en page(s) : p.616-628 Langues : Anglais (eng) Mots-clés : autism,competency,executive function,parent training,randomized controlled trial,strain Index. décimale : PER Périodiques Résumé : This randomized trial compared the first online parent training program for an evidence-supported executive function intervention for autism to in-person parent training with the same dose and content. Parents of autistic children (8-12?years-old; Full Scale IQ above 70) were randomized to in-person (n=51) or online (n=46) training. Training acceptability and feasibility were rated highly by parents, without significant differences between groups. The completion rate was lower for parents in the online versus the in-person training condition, but neither the total time spent with training materials, nor parent and child outcomes differed by condition. Parents reported that training resulted in a reduction in caregiver strain (Cohen?s d=0.66) and modest improvements in child flexibility, emotional control and global EF, but not planning and organization. Dose of parent training had a significant positive effect on child planning and organization problems. These findings did not support the hypothesized superiority of online to in-person training, but they did indicate online is as effective as in-person training at helping parents learn to improve their autistic children?s EF abilities and reduce their own experience of parenting strain. Implications included increased access to training for parents who experience barriers to receiving in-person care.Trial Registration: clinicaltrials.gov Identifier: NCT02708069Lay AbstractThis study compared the first online parent training program for executive function intervention for autism to in-person parent training on the same content. Participants were parents of autistic children, who were between 8 and 12?years of age and did not have intellectual disability. Parents were randomized to the in-person (n=51) or online (n=46) training conditions. Both trainings were developed with stakeholder (parents and autistic people) guidance. In this trial, most parents reported that they liked both trainings and that they were able to implement what they learned with their children. Parents in both groups spent equivalent amounts of time (about 8 hours) with the training materials, but while 94% of parents in the in-person training attended both parent trainings, only 59% of parents in the online group completed all 10 online modules. Parents reported that it was difficult to stay motivated to complete the online trainings over the 10-week trial. Parent and child outcomes did not differ significantly between the groups. Overall, parents reported that the trainings resulted in a reduction in their own parenting strain and improvements in their child?s flexibility, emotional control, and global executive function, but not planning and organization. These findings indicated brief in-person and online training can help parents learn to support and improve their autistic children?s executive function abilities, reducing their own experience of parenting strain. The finding that the online training was equivalent to the in-person trainings is important because it is accessible to parents who encounter barriers to in-person care. En ligne : https://doi.org/10.1177/13623613221111212 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Leveraging technology to make parent training more accessible: Randomized trial of in-person versus online executive function training for parents of autistic children [Texte imprimé et/ou numérique] / Lauren KENWORTHY, Auteur ; Deb CHILDRESS, Auteur ; Anna Chelsea ARMOUR, Auteur ; Alyssa VERBALIS, Auteur ; Anqing ZHANG, Auteur ; Mary TROXEL, Auteur ; Rebecca HANDSMAN, Auteur ; Kelly KOCHER, Auteur ; Yetta MYRICK, Auteur ; Monica WERNER, Auteur ; Katie C ALEXANDER, Auteur ; Lynn CANNON, Auteur ; Laura G. ANTHONY, Auteur . - p.616-628. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.616-628 Mots-clés : autism,competency,executive function,parent training,randomized controlled trial,strain Index. décimale : PER Périodiques Résumé : This randomized trial compared the first online parent training program for an evidence-supported executive function intervention for autism to in-person parent training with the same dose and content. Parents of autistic children (8-12?years-old; Full Scale IQ above 70) were randomized to in-person (n=51) or online (n=46) training. Training acceptability and feasibility were rated highly by parents, without significant differences between groups. The completion rate was lower for parents in the online versus the in-person training condition, but neither the total time spent with training materials, nor parent and child outcomes differed by condition. Parents reported that training resulted in a reduction in caregiver strain (Cohen?s d=0.66) and modest improvements in child flexibility, emotional control and global EF, but not planning and organization. Dose of parent training had a significant positive effect on child planning and organization problems. These findings did not support the hypothesized superiority of online to in-person training, but they did indicate online is as effective as in-person training at helping parents learn to improve their autistic children?s EF abilities and reduce their own experience of parenting strain. Implications included increased access to training for parents who experience barriers to receiving in-person care.Trial Registration: clinicaltrials.gov Identifier: NCT02708069Lay AbstractThis study compared the first online parent training program for executive function intervention for autism to in-person parent training on the same content. Participants were parents of autistic children, who were between 8 and 12?years of age and did not have intellectual disability. Parents were randomized to the in-person (n=51) or online (n=46) training conditions. Both trainings were developed with stakeholder (parents and autistic people) guidance. In this trial, most parents reported that they liked both trainings and that they were able to implement what they learned with their children. Parents in both groups spent equivalent amounts of time (about 8 hours) with the training materials, but while 94% of parents in the in-person training attended both parent trainings, only 59% of parents in the online group completed all 10 online modules. Parents reported that it was difficult to stay motivated to complete the online trainings over the 10-week trial. Parent and child outcomes did not differ significantly between the groups. Overall, parents reported that the trainings resulted in a reduction in their own parenting strain and improvements in their child?s flexibility, emotional control, and global executive function, but not planning and organization. These findings indicated brief in-person and online training can help parents learn to support and improve their autistic children?s executive function abilities, reducing their own experience of parenting strain. The finding that the online training was equivalent to the in-person trainings is important because it is accessible to parents who encounter barriers to in-person care. En ligne : https://doi.org/10.1177/13623613221111212 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Mental representations of speech and musical pitch contours reveal a diversity of profiles in autism spectrum disorder / Li WANG in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.629-646 Titre : Mental representations of speech and musical pitch contours reveal a diversity of profiles in autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Li WANG, Auteur ; Jia Hoong ONG, Auteur ; Emmanuel PONSOT, Auteur ; Qingqi HOU, Auteur ; Cunmei JIANG, Auteur ; Fang LIU, Auteur Article en page(s) : p.629-646 Langues : Anglais (eng) Mots-clés : autism spectrum disorder,mental representation,music,pitch processing,reverse correlation,speech Index. décimale : PER Périodiques Résumé : As an information-bearing auditory attribute of sound, pitch plays a crucial role in the perception of speech and music. Studies examining pitch processing in autism spectrum disorder have produced equivocal results. To understand this discrepancy from a mechanistic perspective, we used a novel data-driven method, the reverse-correlation paradigm, to explore whether the equivocal findings in autism spectrum disorder have high-level origins in top-down comparisons of internal mental representations of pitch contours. Thirty-two Mandarin-speaking autistic individuals and 32 non-autistic individuals undertook three subtasks testing mental representations of pitch contours in speech, complex tone and melody, respectively. The results indicate that while the two groups exhibited similar representations of pitch contours across the three conditions, the autistic group showed a significantly higher intra-group variability than the non-autistic group. In addition, the two groups did not differ significantly in internal noise, a measure of the robustness of participant responses to external variability, suggesting that the present findings translate genuinely qualitative differences and similarities between groups in pitch processing. These findings uncover for the first time that pitch patterns in speech and music are mentally represented in a similar manner in autistic and non-autistic individuals, through domain-general top-down mechanisms.Lay abstractAs a key auditory attribute of sounds, pitch is ubiquitous in our everyday listening experience involving language, music and environmental sounds. Given its critical role in auditory processing related to communication, numerous studies have investigated pitch processing in autism spectrum disorder. However, the findings have been mixed, reporting either enhanced, typical or impaired performance among autistic individuals. By investigating top-down comparisons of internal mental representations of pitch contours in speech and music, this study shows for the first time that, while autistic individuals exhibit diverse profiles of pitch processing compared to non-autistic individuals, their mental representations of pitch contours are typical across domains. These findings suggest that pitch-processing mechanisms are shared across domains in autism spectrum disorder and provide theoretical implications for using music to improve speech for those autistic individuals who have language problems. En ligne : https://doi.org/10.1177/13623613221111207 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Mental representations of speech and musical pitch contours reveal a diversity of profiles in autism spectrum disorder [Texte imprimé et/ou numérique] / Li WANG, Auteur ; Jia Hoong ONG, Auteur ; Emmanuel PONSOT, Auteur ; Qingqi HOU, Auteur ; Cunmei JIANG, Auteur ; Fang LIU, Auteur . - p.629-646. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.629-646 Mots-clés : autism spectrum disorder,mental representation,music,pitch processing,reverse correlation,speech Index. décimale : PER Périodiques Résumé : As an information-bearing auditory attribute of sound, pitch plays a crucial role in the perception of speech and music. Studies examining pitch processing in autism spectrum disorder have produced equivocal results. To understand this discrepancy from a mechanistic perspective, we used a novel data-driven method, the reverse-correlation paradigm, to explore whether the equivocal findings in autism spectrum disorder have high-level origins in top-down comparisons of internal mental representations of pitch contours. Thirty-two Mandarin-speaking autistic individuals and 32 non-autistic individuals undertook three subtasks testing mental representations of pitch contours in speech, complex tone and melody, respectively. The results indicate that while the two groups exhibited similar representations of pitch contours across the three conditions, the autistic group showed a significantly higher intra-group variability than the non-autistic group. In addition, the two groups did not differ significantly in internal noise, a measure of the robustness of participant responses to external variability, suggesting that the present findings translate genuinely qualitative differences and similarities between groups in pitch processing. These findings uncover for the first time that pitch patterns in speech and music are mentally represented in a similar manner in autistic and non-autistic individuals, through domain-general top-down mechanisms.Lay abstractAs a key auditory attribute of sounds, pitch is ubiquitous in our everyday listening experience involving language, music and environmental sounds. Given its critical role in auditory processing related to communication, numerous studies have investigated pitch processing in autism spectrum disorder. However, the findings have been mixed, reporting either enhanced, typical or impaired performance among autistic individuals. By investigating top-down comparisons of internal mental representations of pitch contours in speech and music, this study shows for the first time that, while autistic individuals exhibit diverse profiles of pitch processing compared to non-autistic individuals, their mental representations of pitch contours are typical across domains. These findings suggest that pitch-processing mechanisms are shared across domains in autism spectrum disorder and provide theoretical implications for using music to improve speech for those autistic individuals who have language problems. En ligne : https://doi.org/10.1177/13623613221111207 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Parental experience of parent-mediated intervention for children with ASD: A systematic review and qualitative evidence synthesis / Lucie JUREK in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.647-666 Titre : Parental experience of parent-mediated intervention for children with ASD: A systematic review and qualitative evidence synthesis Type de document : Texte imprimé et/ou numérique Auteurs : Lucie JUREK, Auteur ; Kathy LEADBITTER, Auteur ; Bruno FALISSARD, Auteur ; Cyrille COLIN, Auteur ; Sandrine TOUZET, Auteur ; Marie-Maude GEOFFRAY, Auteur Article en page(s) : p.647-666 Langues : Anglais (eng) Mots-clés : autism spectrum disorder,parent-mediated intervention,qualitative research Index. décimale : PER Périodiques Résumé : While the effectiveness of parent-mediated interventions in the field of autism spectrum disorder is well documented, information on the experience of parents involved in parent-mediated interventions is limited. We performed a systematic review with qualitative evidence synthesis to explore the experience of parent-mediated interventions in parents of children with autism spectrum disorder. PubMed, Scopus, PsycINFO, CINAHL, and Sociology Collection were searched from the date of their creation until 25 February 2022. Qualitative studies reporting parents' experience of parent-mediated interventions were included. Two independent reviewers assessed the risk of bias. The findings of the selected studies were extracted and synthesized using the meta-aggregation method. The results are reported according to PRISMA and ENTREQ guidelines. A total of 23 studies were synthesized representing 345 participants. We found 34 categories that were summarized in four synthesized themes: barriers to implementation and logistical issues, feeling overwhelmed and stressed (a need for support), facilitators of implementation, and empowerment in the parent and improvement in the child. Parents' experience of parent-mediated interventions in autism spectrum disorder is balanced between positive outcomes for them and their child, emotional struggles, and some difficulties in implementing parent-mediated interventions. Based on these results, we propose new ways to improve implementation of parent-mediated interventions and research in the field.Lay abstractThe effectiveness of parent-mediated interventions in the field of autism spectrum disorder is well documented but information on the experience of parents involved in parent-mediated interventions is limited.This study is the first synthesis of evidence concerning the experience of parents involved in parent-mediated interventions. It synthesizes the voice of 345 parents across the world into four general themes: barriers to implementation and logistical issues, feeling overwhelmed and stressed (a need for support), facilitators of implementation, and empowerment in the parent and improvement in the child.The findings of our study provide evidence that parent-mediated interventions should be adapted to the needs of each family. Specific care and support should be offered to parents in addition to parent-mediated interventions. Our study, however, highlights which outcomes are important to parents and should be considered in future studies. En ligne : https://doi.org/10.1177/13623613221112204 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Parental experience of parent-mediated intervention for children with ASD: A systematic review and qualitative evidence synthesis [Texte imprimé et/ou numérique] / Lucie JUREK, Auteur ; Kathy LEADBITTER, Auteur ; Bruno FALISSARD, Auteur ; Cyrille COLIN, Auteur ; Sandrine TOUZET, Auteur ; Marie-Maude GEOFFRAY, Auteur . - p.647-666. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.647-666 Mots-clés : autism spectrum disorder,parent-mediated intervention,qualitative research Index. décimale : PER Périodiques Résumé : While the effectiveness of parent-mediated interventions in the field of autism spectrum disorder is well documented, information on the experience of parents involved in parent-mediated interventions is limited. We performed a systematic review with qualitative evidence synthesis to explore the experience of parent-mediated interventions in parents of children with autism spectrum disorder. PubMed, Scopus, PsycINFO, CINAHL, and Sociology Collection were searched from the date of their creation until 25 February 2022. Qualitative studies reporting parents' experience of parent-mediated interventions were included. Two independent reviewers assessed the risk of bias. The findings of the selected studies were extracted and synthesized using the meta-aggregation method. The results are reported according to PRISMA and ENTREQ guidelines. A total of 23 studies were synthesized representing 345 participants. We found 34 categories that were summarized in four synthesized themes: barriers to implementation and logistical issues, feeling overwhelmed and stressed (a need for support), facilitators of implementation, and empowerment in the parent and improvement in the child. Parents' experience of parent-mediated interventions in autism spectrum disorder is balanced between positive outcomes for them and their child, emotional struggles, and some difficulties in implementing parent-mediated interventions. Based on these results, we propose new ways to improve implementation of parent-mediated interventions and research in the field.Lay abstractThe effectiveness of parent-mediated interventions in the field of autism spectrum disorder is well documented but information on the experience of parents involved in parent-mediated interventions is limited.This study is the first synthesis of evidence concerning the experience of parents involved in parent-mediated interventions. It synthesizes the voice of 345 parents across the world into four general themes: barriers to implementation and logistical issues, feeling overwhelmed and stressed (a need for support), facilitators of implementation, and empowerment in the parent and improvement in the child.The findings of our study provide evidence that parent-mediated interventions should be adapted to the needs of each family. Specific care and support should be offered to parents in addition to parent-mediated interventions. Our study, however, highlights which outcomes are important to parents and should be considered in future studies. En ligne : https://doi.org/10.1177/13623613221112204 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

A comparison of the content and nature of worries of autistic and neurotypical young people as they transition from school / Jack WALDMAN in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.667-678 Titre : A comparison of the content and nature of worries of autistic and neurotypical young people as they transition from school Type de document : Texte imprimé et/ou numérique Auteurs : Jack WALDMAN, Auteur ; Ann MCPAUL, Auteur ; Andrew JAHODA, Auteur Article en page(s) : p.667-678 Langues : Anglais (eng) Mots-clés : anxiety,autism,transition,worry Index. décimale : PER Périodiques Résumé : The prevalence of anxiety is higher in autistic young people, compared to neurotypical youths. However, the nature of worry in autistic young people is under-researched. Transition from secondary school is a time of change and can be challenging for autistic adolescents. This project explored the content and emotional impact of worries in neurotypical and autistic young people during transition. Twenty-two autistic people and 22 neurotypical people, aged 16-18, were recruited from mainstream schools. Participants completed a novel task to identify and explore the nature of their main worries. The participants' worry frequency and distress levels in relation to their most salient concerns, and their anxiety levels, were measured. Content analysis highlighted similarities and differences between the two groups' worries. Both groups worried about failure and their prospects of further education. Autistic people were more concerned about change and friendship, whereas more salient worries for neurotypical individuals were about work and money. Autistic people were more distressed by their worries than neurotypical individuals. Findings regarding the nature of autistic young people?s worries may help inform interventions. Moreover, asking autistic people about their worries as they leave school may help to address their concerns, ease their transition and reduce distress.Lay abstractAutistic young people experience higher levels of anxiety than neurotypical young people. Having worries is part of feeling anxious. This makes it surprising that very little research has looked at the kind of worries autistic young people have. Leaving school, in particular, can be a worrying time for young people. Twenty-two autistic young people and 22 neurotypical young people who were at mainstream secondary schools agreed to take part in the study. They were between 16 and 18?years of age. They were asked to sort through a series of pictures, showing the different types of worries that young people might experience. They were then asked to pick out their four main worries and say how much they thought about each worry and how upset the worry made them. They also completed a questionnaire about their level of anxiety. There were similarities and differences between the autistic and neurotypical young people?s worries. Both groups worried about failing and how they might get on in further education. The autistic young people were more worried about change and friendships. Work and money were particular concerns for the neurotypical young people. The autistic young people said that they found their worries more upsetting than the neurotypical young people. Having a better understanding of autistic young people?s worries at important points in their lives might mean that more timely help and support can be given to them. Simply knowing what to ask young autistic school leavers about may help them to express unspoken concerns. En ligne : https://doi.org/10.1177/13623613221111313 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] A comparison of the content and nature of worries of autistic and neurotypical young people as they transition from school [Texte imprimé et/ou numérique] / Jack WALDMAN, Auteur ; Ann MCPAUL, Auteur ; Andrew JAHODA, Auteur . - p.667-678. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.667-678 Mots-clés : anxiety,autism,transition,worry Index. décimale : PER Périodiques Résumé : The prevalence of anxiety is higher in autistic young people, compared to neurotypical youths. However, the nature of worry in autistic young people is under-researched. Transition from secondary school is a time of change and can be challenging for autistic adolescents. This project explored the content and emotional impact of worries in neurotypical and autistic young people during transition. Twenty-two autistic people and 22 neurotypical people, aged 16-18, were recruited from mainstream schools. Participants completed a novel task to identify and explore the nature of their main worries. The participants' worry frequency and distress levels in relation to their most salient concerns, and their anxiety levels, were measured. Content analysis highlighted similarities and differences between the two groups' worries. Both groups worried about failure and their prospects of further education. Autistic people were more concerned about change and friendship, whereas more salient worries for neurotypical individuals were about work and money. Autistic people were more distressed by their worries than neurotypical individuals. Findings regarding the nature of autistic young people?s worries may help inform interventions. Moreover, asking autistic people about their worries as they leave school may help to address their concerns, ease their transition and reduce distress.Lay abstractAutistic young people experience higher levels of anxiety than neurotypical young people. Having worries is part of feeling anxious. This makes it surprising that very little research has looked at the kind of worries autistic young people have. Leaving school, in particular, can be a worrying time for young people. Twenty-two autistic young people and 22 neurotypical young people who were at mainstream secondary schools agreed to take part in the study. They were between 16 and 18?years of age. They were asked to sort through a series of pictures, showing the different types of worries that young people might experience. They were then asked to pick out their four main worries and say how much they thought about each worry and how upset the worry made them. They also completed a questionnaire about their level of anxiety. There were similarities and differences between the autistic and neurotypical young people?s worries. Both groups worried about failing and how they might get on in further education. The autistic young people were more worried about change and friendships. Work and money were particular concerns for the neurotypical young people. The autistic young people said that they found their worries more upsetting than the neurotypical young people. Having a better understanding of autistic young people?s worries at important points in their lives might mean that more timely help and support can be given to them. Simply knowing what to ask young autistic school leavers about may help them to express unspoken concerns. En ligne : https://doi.org/10.1177/13623613221111313 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Psychiatry training in autism spectrum disorder and intellectual disability: Ongoing gaps and emerging opportunities / Natasha MARRUS in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.679-689 Titre : Psychiatry training in autism spectrum disorder and intellectual disability: Ongoing gaps and emerging opportunities Type de document : Texte imprimé et/ou numérique Auteurs : Natasha MARRUS, Auteur ; Kathleen A KOTH, Auteur ; Jessica A HELLINGS, Auteur ; Rachel MCDONALD, Auteur ; McLeod Frampton GWYNETTE, Auteur ; Rebecca MUHLE, Auteur ; William D LOHR, Auteur ; Roma A VASA, Auteur Article en page(s) : p.679-689 Langues : Anglais (eng) Mots-clés : autism spectrum disorder,education,intellectual disability,psychiatry,residency training Index. décimale : PER Périodiques Résumé : Autism spectrum disorder and intellectual disability are associated with psychiatric comorbidities, yet a 2009 study of US child and adolescent psychiatry program directors indicated that psychiatry residents receive insufficient training in autism spectrum disorder/intellectual disability. This follow-up study surveyed child and adolescent psychiatry and general psychiatry program directors to assess (1) the current extent of residency training in autism spectrum disorder/intellectual disability, (2) program director perceptions of educational topics and resident competency in autism spectrum disorder/intellectual disability, and (3) preferred resources to strengthen autism spectrum disorder/intellectual disability training. As in 2009, many child and adolescent psychiatry program directors reported few lecture hours, although current child and adolescent psychiatry residents saw slightly more patients with autism spectrum disorder but not intellectual disability. General psychiatry program directors reported fewer lecture hours in autism spectrum disorder/intellectual disability and fewer patients with autism spectrum disorder than child and adolescent psychiatry program directors. Both child and adolescent psychiatry and general psychiatry program directors recognized the importance of a range of educational topics in autism spectrum disorder/intellectual disability. Child and adolescent psychiatry program directors reported higher resident competency, and lecture hours and patients seen moderately correlated with resident competency. Program directors indicated that online videos and other resources would help improve autism spectrum disorder/intellectual disability training in their programs. Collectively, these findings suggest minimal improvements in autism spectrum disorder/intellectual disability training over the past decade and highlight the urgent need to advance psychiatry training in this field through dissemination of resources.Lay abstractChildren, adolescents, and adults with autism spectrum disorder and intellectual disability experience high rates of co-occurring psychiatric conditions throughout their lifetime. However, there is a shortage of psychiatrists to treat these populations. We evaluated how much education psychiatrists-in-training receive on how to care for individuals with autism spectrum disorder/intellectual disability. We found that in many psychiatry programs, residents receive limited training experiences in autism spectrum disorder/intellectual disability involving lectures and patient contact and that psychiatry program directors would benefit from more resources to strengthen education in autism spectrum disorder/intellectual disability. En ligne : https://doi.org/10.1177/13623613221112197 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Psychiatry training in autism spectrum disorder and intellectual disability: Ongoing gaps and emerging opportunities [Texte imprimé et/ou numérique] / Natasha MARRUS, Auteur ; Kathleen A KOTH, Auteur ; Jessica A HELLINGS, Auteur ; Rachel MCDONALD, Auteur ; McLeod Frampton GWYNETTE, Auteur ; Rebecca MUHLE, Auteur ; William D LOHR, Auteur ; Roma A VASA, Auteur . - p.679-689. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.679-689 Mots-clés : autism spectrum disorder,education,intellectual disability,psychiatry,residency training Index. décimale : PER Périodiques Résumé : Autism spectrum disorder and intellectual disability are associated with psychiatric comorbidities, yet a 2009 study of US child and adolescent psychiatry program directors indicated that psychiatry residents receive insufficient training in autism spectrum disorder/intellectual disability. This follow-up study surveyed child and adolescent psychiatry and general psychiatry program directors to assess (1) the current extent of residency training in autism spectrum disorder/intellectual disability, (2) program director perceptions of educational topics and resident competency in autism spectrum disorder/intellectual disability, and (3) preferred resources to strengthen autism spectrum disorder/intellectual disability training. As in 2009, many child and adolescent psychiatry program directors reported few lecture hours, although current child and adolescent psychiatry residents saw slightly more patients with autism spectrum disorder but not intellectual disability. General psychiatry program directors reported fewer lecture hours in autism spectrum disorder/intellectual disability and fewer patients with autism spectrum disorder than child and adolescent psychiatry program directors. Both child and adolescent psychiatry and general psychiatry program directors recognized the importance of a range of educational topics in autism spectrum disorder/intellectual disability. Child and adolescent psychiatry program directors reported higher resident competency, and lecture hours and patients seen moderately correlated with resident competency. Program directors indicated that online videos and other resources would help improve autism spectrum disorder/intellectual disability training in their programs. Collectively, these findings suggest minimal improvements in autism spectrum disorder/intellectual disability training over the past decade and highlight the urgent need to advance psychiatry training in this field through dissemination of resources.Lay abstractChildren, adolescents, and adults with autism spectrum disorder and intellectual disability experience high rates of co-occurring psychiatric conditions throughout their lifetime. However, there is a shortage of psychiatrists to treat these populations. We evaluated how much education psychiatrists-in-training receive on how to care for individuals with autism spectrum disorder/intellectual disability. We found that in many psychiatry programs, residents receive limited training experiences in autism spectrum disorder/intellectual disability involving lectures and patient contact and that psychiatry program directors would benefit from more resources to strengthen education in autism spectrum disorder/intellectual disability. En ligne : https://doi.org/10.1177/13623613221112197 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Relationships between alexithymia, interoception, and emotional empathy in autism spectrum disorder / Christiana D BUTERA in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.690-703 Titre : Relationships between alexithymia, interoception, and emotional empathy in autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Christiana D BUTERA, Auteur ; Laura HARRISON, Auteur ; Emily KILROY, Auteur ; Aditya JAYASHANKAR, Auteur ; Michelle SHIPKOVA, Auteur ; Ariel PRUYSER, Auteur ; Lisa AZIZ-ZADEH, Auteur Article en page(s) : p.690-703 Langues : Anglais (eng) Mots-clés : alexithymia,ASD,autism,empathy,interoception,personal distress Index. décimale : PER Périodiques Résumé : Some studies suggest that individuals with autism spectrum disorder have reduced emotional empathy while others do not. The presence of co-occurring alexithymia in autism spectrum disorder and differences in interoception have been associated with reductions in empathic ability. To fully explore the relationships between interoception, alexithymia, and emotional empathy, we collected self-report and interview data in 35 youth with autism spectrum disorder and 40 typically developing controls (ages 8-17?years). The autism spectrum disorder sample had increased alexithymia and physiological hyperarousal compared to typically developing controls, but there were no group differences in interoception or emotional empathy. Alexithymia severity correlated with higher personal distress in both groups and with lower empathic concern in the autism spectrum disorder group. Within the autism spectrum disorder group, higher incidence of reports of bodily sensation when describing emotional experience correlated with lower personal distress and lower alexithymia. In addition, although empathic concern was negatively correlated with alexithymia in the autism spectrum disorder group, across groups, the alexithymia hypothesis was supported in only the personal distress domain of emotional empathy. These results suggest emotional empathy; personal distress, in particular, is not intrinsically impaired in autism spectrum disorder.Lay abstractEmpathy, the ability to understand and share the emotions of others, is a necessary skill for social functioning and can be categorized into cognitive and emotional empathy. There is evidence to suggest that individuals with autism spectrum disorder have difficulties with cognitive empathy, the ability to imagine how another person is thinking or feeling. However, it is unclear if individuals with autism spectrum disorder struggle with emotional empathy, the ability to share and feel emotions others are experiencing. Self-report and interview data were collected to explore the relationships between interoception (individuals' self-reported awareness of sensation from their body such as thirst, heartbeat, etc.), alexithymia (an individual?s ability to describe and distinguish between their own emotions), and emotional empathy in 35 youth with autism spectrum disorder and 40 typically developing youth. Greater personal distress to others' emotions and greater difficulty describing and recognizing self-emotions were associated with reporting fewer physical sensations in the body when experiencing emotion in the autism spectrum disorder group. The results of this study suggest that while autism spectrum disorder youth with concomitant alexithymia may experience emotional empathy differently, it should not be characterized as an absence of a capacity for emotional empathy. En ligne : https://doi.org/10.1177/13623613221111310 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Relationships between alexithymia, interoception, and emotional empathy in autism spectrum disorder [Texte imprimé et/ou numérique] / Christiana D BUTERA, Auteur ; Laura HARRISON, Auteur ; Emily KILROY, Auteur ; Aditya JAYASHANKAR, Auteur ; Michelle SHIPKOVA, Auteur ; Ariel PRUYSER, Auteur ; Lisa AZIZ-ZADEH, Auteur . - p.690-703. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.690-703 Mots-clés : alexithymia,ASD,autism,empathy,interoception,personal distress Index. décimale : PER Périodiques Résumé : Some studies suggest that individuals with autism spectrum disorder have reduced emotional empathy while others do not. The presence of co-occurring alexithymia in autism spectrum disorder and differences in interoception have been associated with reductions in empathic ability. To fully explore the relationships between interoception, alexithymia, and emotional empathy, we collected self-report and interview data in 35 youth with autism spectrum disorder and 40 typically developing controls (ages 8-17?years). The autism spectrum disorder sample had increased alexithymia and physiological hyperarousal compared to typically developing controls, but there were no group differences in interoception or emotional empathy. Alexithymia severity correlated with higher personal distress in both groups and with lower empathic concern in the autism spectrum disorder group. Within the autism spectrum disorder group, higher incidence of reports of bodily sensation when describing emotional experience correlated with lower personal distress and lower alexithymia. In addition, although empathic concern was negatively correlated with alexithymia in the autism spectrum disorder group, across groups, the alexithymia hypothesis was supported in only the personal distress domain of emotional empathy. These results suggest emotional empathy; personal distress, in particular, is not intrinsically impaired in autism spectrum disorder.Lay abstractEmpathy, the ability to understand and share the emotions of others, is a necessary skill for social functioning and can be categorized into cognitive and emotional empathy. There is evidence to suggest that individuals with autism spectrum disorder have difficulties with cognitive empathy, the ability to imagine how another person is thinking or feeling. However, it is unclear if individuals with autism spectrum disorder struggle with emotional empathy, the ability to share and feel emotions others are experiencing. Self-report and interview data were collected to explore the relationships between interoception (individuals' self-reported awareness of sensation from their body such as thirst, heartbeat, etc.), alexithymia (an individual?s ability to describe and distinguish between their own emotions), and emotional empathy in 35 youth with autism spectrum disorder and 40 typically developing youth. Greater personal distress to others' emotions and greater difficulty describing and recognizing self-emotions were associated with reporting fewer physical sensations in the body when experiencing emotion in the autism spectrum disorder group. The results of this study suggest that while autism spectrum disorder youth with concomitant alexithymia may experience emotional empathy differently, it should not be characterized as an absence of a capacity for emotional empathy. En ligne : https://doi.org/10.1177/13623613221111310 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Mental health service availability for autistic youth in New York City: An examination of the developmental disability and mental health service systems / Paige E CERVANTES in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.704-713 Titre : Mental health service availability for autistic youth in New York City: An examination of the developmental disability and mental health service systems Type de document : Texte imprimé et/ou numérique Auteurs : Paige E CERVANTES, Auteur ; Greta R CONLON, Auteur ; Dana E. M. SEAG, Auteur ; Michael FEDER, Auteur ; Qortni LANG, Auteur ; Samantha MERIL, Auteur ; Argelinda BARONI, Auteur ; Annie LI, Auteur ; Kimberly E HOAGWOOD, Auteur ; Sarah M HORWITZ, Auteur Article en page(s) : p.704-713 Langues : Anglais (eng) Mots-clés : autism spectrum disorder,community services,mental health,service systems Index. décimale : PER Périodiques Résumé : Psychiatric conditions are common in autism; however, a multitude of barriers exist in accessing community-based mental health care for autistic youth. Perhaps the first and most formidable barrier is identifying a provider that offers mental health treatment to autistic youth within the many service systems involved in supporting the autism community. These systems typically function independently of one another, contributing to the complexity of accessing services. To identify gaps caused by New York?s multisystem care model for autistic youth, and as part of a larger quality improvement initiative to advance suicide risk management in several New York City emergency departments, we conducted a telephone survey to identify outpatient mental health service availability for autistic youth with depressive symptoms or suicidal thoughts or behaviors in New York City across the state?s mental health and developmental disability systems. Results demonstrated that while a greater proportion of clinics in the mental health system compared with agencies in the developmental disability system offered outpatient mental health services to autistic youth (47.1% vs 25.0%), there is remarkably limited service availability overall. Efforts to reduce these care inequities through policy reform and improving workforce capacity are urgently needed.Lay abstractAutistic children and adolescents experience high rates of co-occurring mental health conditions, including depression and suicidality, which are frequently identified by stakeholders as treatment priorities. Unfortunately, accessing community-based mental health care is often difficult for autistic youth and their families. The first obstacle families confront is finding a provider that offers mental health treatment to autistic youth within the many service systems involved in supporting the autism community. The mental health and developmental disability systems are two of the most commonly accessed, and previous work has shown there is often confusion over which of these systems is responsible for providing mental health care to autistic individuals. In this study, we conducted a telephone survey to determine the availability of outpatient mental health services for autistic youth with depressive symptoms or suicidal thoughts or behaviors in New York City across the state?s mental health and developmental disability systems. Results showed that while a greater percentage of clinics in the mental health system compared with in the developmental disability system offered outpatient mental health services to autistic youth (47.1% vs 25.0%), many more did not offer care to autistic youth and there were very few options overall. Therefore, it is important that changes to policy are made to increase the availability of services and that mental health care providers' knowledge and confidence in working with autistic youth are improved. En ligne : https://doi.org/10.1177/13623613221112202 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Mental health service availability for autistic youth in New York City: An examination of the developmental disability and mental health service systems [Texte imprimé et/ou numérique] / Paige E CERVANTES, Auteur ; Greta R CONLON, Auteur ; Dana E. M. SEAG, Auteur ; Michael FEDER, Auteur ; Qortni LANG, Auteur ; Samantha MERIL, Auteur ; Argelinda BARONI, Auteur ; Annie LI, Auteur ; Kimberly E HOAGWOOD, Auteur ; Sarah M HORWITZ, Auteur . - p.704-713. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.704-713 Mots-clés : autism spectrum disorder,community services,mental health,service systems Index. décimale : PER Périodiques Résumé : Psychiatric conditions are common in autism; however, a multitude of barriers exist in accessing community-based mental health care for autistic youth. Perhaps the first and most formidable barrier is identifying a provider that offers mental health treatment to autistic youth within the many service systems involved in supporting the autism community. These systems typically function independently of one another, contributing to the complexity of accessing services. To identify gaps caused by New York?s multisystem care model for autistic youth, and as part of a larger quality improvement initiative to advance suicide risk management in several New York City emergency departments, we conducted a telephone survey to identify outpatient mental health service availability for autistic youth with depressive symptoms or suicidal thoughts or behaviors in New York City across the state?s mental health and developmental disability systems. Results demonstrated that while a greater proportion of clinics in the mental health system compared with agencies in the developmental disability system offered outpatient mental health services to autistic youth (47.1% vs 25.0%), there is remarkably limited service availability overall. Efforts to reduce these care inequities through policy reform and improving workforce capacity are urgently needed.Lay abstractAutistic children and adolescents experience high rates of co-occurring mental health conditions, including depression and suicidality, which are frequently identified by stakeholders as treatment priorities. Unfortunately, accessing community-based mental health care is often difficult for autistic youth and their families. The first obstacle families confront is finding a provider that offers mental health treatment to autistic youth within the many service systems involved in supporting the autism community. The mental health and developmental disability systems are two of the most commonly accessed, and previous work has shown there is often confusion over which of these systems is responsible for providing mental health care to autistic individuals. In this study, we conducted a telephone survey to determine the availability of outpatient mental health services for autistic youth with depressive symptoms or suicidal thoughts or behaviors in New York City across the state?s mental health and developmental disability systems. Results showed that while a greater percentage of clinics in the mental health system compared with in the developmental disability system offered outpatient mental health services to autistic youth (47.1% vs 25.0%), many more did not offer care to autistic youth and there were very few options overall. Therefore, it is important that changes to policy are made to increase the availability of services and that mental health care providers' knowledge and confidence in working with autistic youth are improved. En ligne : https://doi.org/10.1177/13623613221112202 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Mobile and online consumer tools to screen for autism do not promote equity / Benjamin W SANDERS in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.714-722 Titre : Mobile and online consumer tools to screen for autism do not promote equity Type de document : Texte imprimé et/ou numérique Auteurs : Benjamin W SANDERS, Auteur ; Steven BEDRICK, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Shannon A BROWN, Auteur ; Jill K DOLATA, Auteur ; Eric FOMBONNE, Auteur ; Julie A REEDER, Auteur ; Luis Andres RIVAS VAZQUEZ, Auteur ; Plyce FUCHU, Auteur ; Yesenia MORALES, Auteur ; Katharine E ZUCKERMAN, Auteur Article en page(s) : p.714-722 Langues : Anglais (eng) Mots-clés : autism spectrum disorder,digital divide,mass screening,mobile applications,parents,preschool,child Index. décimale : PER Périodiques Résumé : Limited access to screening and evaluation for autism spectrum disorder in children is a major barrier to improving outcomes for marginalized families. To identify and evaluate available digital autism spectrum disorder screening resources, we simulated web and mobile app searches by a parent concerned about their child?s likelihood of autism spectrum disorder. Included digital autism spectrum disorder screening tools (a) were on Internet or mobile app; (b) were in English; (c) had a parent user inputting data; (d) assigned likelihood category to child <9?years; and (e) screened for autism spectrum disorder. Ten search terms, developed using Google Search and parent panel recommendations, were used to search web and app tools in the United States, the United Kingdom, India, Australia, and Canada using Virtual Private Networks. Results were examined for attributes likely to benefit parents in marginalized communities, such as ease of searching, language versions, and reading level. The four terms most likely to identify any tools were ''autism quiz,'' ''autism screening tool,'' ''does my child have autism,'' and ''autism toddler.'' Three out of five searches contained autism spectrum disorder screening tools, as did one of 10 links or apps. Searches identified a total of 1475 websites and 919 apps, which yielded 23 unique tools. Most tools required continuous Internet access or offered only English, and many had high reading levels. In conclusion, screening tools are available, but they are not easily found. Barriers include inaccessibility to parents with limited literacy or limited English proficiency, and frequent encounters with games, advertisements, and user fees.Lay AbstractMany parents wonder if their child might have autism. Many parents use their smartphones to answer health questions. We asked, ''How easy or hard is it for parents to use their smartphones to find 'tools' to test their child for signs of autism?'' After doing pretend parent searches, we found that only one in 10 search results were tools to test children for autism. These tools were not designed for parents who have low income or other challenges such as low literacy skills, low English proficiency, or not being tech-savvy. En ligne : https://doi.org/10.1177/13623613221114280 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Mobile and online consumer tools to screen for autism do not promote equity [Texte imprimé et/ou numérique] / Benjamin W SANDERS, Auteur ; Steven BEDRICK, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Shannon A BROWN, Auteur ; Jill K DOLATA, Auteur ; Eric FOMBONNE, Auteur ; Julie A REEDER, Auteur ; Luis Andres RIVAS VAZQUEZ, Auteur ; Plyce FUCHU, Auteur ; Yesenia MORALES, Auteur ; Katharine E ZUCKERMAN, Auteur . - p.714-722. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.714-722 Mots-clés : autism spectrum disorder,digital divide,mass screening,mobile applications,parents,preschool,child Index. décimale : PER Périodiques Résumé : Limited access to screening and evaluation for autism spectrum disorder in children is a major barrier to improving outcomes for marginalized families. To identify and evaluate available digital autism spectrum disorder screening resources, we simulated web and mobile app searches by a parent concerned about their child?s likelihood of autism spectrum disorder. Included digital autism spectrum disorder screening tools (a) were on Internet or mobile app; (b) were in English; (c) had a parent user inputting data; (d) assigned likelihood category to child <9?years; and (e) screened for autism spectrum disorder. Ten search terms, developed using Google Search and parent panel recommendations, were used to search web and app tools in the United States, the United Kingdom, India, Australia, and Canada using Virtual Private Networks. Results were examined for attributes likely to benefit parents in marginalized communities, such as ease of searching, language versions, and reading level. The four terms most likely to identify any tools were ''autism quiz,'' ''autism screening tool,'' ''does my child have autism,'' and ''autism toddler.'' Three out of five searches contained autism spectrum disorder screening tools, as did one of 10 links or apps. Searches identified a total of 1475 websites and 919 apps, which yielded 23 unique tools. Most tools required continuous Internet access or offered only English, and many had high reading levels. In conclusion, screening tools are available, but they are not easily found. Barriers include inaccessibility to parents with limited literacy or limited English proficiency, and frequent encounters with games, advertisements, and user fees.Lay AbstractMany parents wonder if their child might have autism. Many parents use their smartphones to answer health questions. We asked, ''How easy or hard is it for parents to use their smartphones to find 'tools' to test their child for signs of autism?'' After doing pretend parent searches, we found that only one in 10 search results were tools to test children for autism. These tools were not designed for parents who have low income or other challenges such as low literacy skills, low English proficiency, or not being tech-savvy. En ligne : https://doi.org/10.1177/13623613221114280 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Patterns of sensory processing in young children with autism: Differences in autism characteristics, adaptive skills, and attentional problems / Girija KADLASKAR in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.723-736 Titre : Patterns of sensory processing in young children with autism: Differences in autism characteristics, adaptive skills, and attentional problems Type de document : Texte imprimé et/ou numérique Auteurs : Girija KADLASKAR, Auteur ; Pin-Hsun MAO, Auteur ; Ana-Maria IOSIF, Auteur ; David AMARAL, Auteur ; Christine WU NORDAHL, Auteur ; Meghan MILLER, Auteur Article en page(s) : p.723-736 Langues : Anglais (eng) Mots-clés : autism spectrum disorders,latent profile analysis,sensory classes,sensory processing Index. décimale : PER Périodiques Résumé : Sensory processing differences are widely reported in autism. However, our understanding of sensory profiles in this population has been complicated due to the heterogeneous presentation of sensory symptoms. We addressed this by using latent profile analysis, allowing for the identification of more homogeneous sensory classes in a large cohort (n=211 (52 females), 2-4?years) of autistic children using subscale scores from the Short Sensory Profile. Based on the patterns of both severity and sensory modality, four classes emerged: Moderate/Mixed (35.5%), Severe/Mixed (8.5%), Moderate/Broad (14.6%), and Low/Mixed (41.1%). While a subset of children displayed normative sensory-related behaviors, the majority showed a combination of both hypo- and hyper-reactivity across various sensory modalities. Subsequent analyses showed that the class characterized by Severe/Mixed sensory differences exhibited greater problems in a variety of areas such as social and adaptive skills and attention-deficit/hyperactivity disorder symptoms, whereas the Low/Mixed class showed overall fewer problems. Identification of homogeneous classes may be useful for neurophysiological/imaging studies focusing on studying underlying mechanisms linked with specific sensory patterns. These findings may help clinicians identify children with particular sensory profiles that might relate to other social, adaptive, or behavioral domains with potential implications for intervention.Lay abstractResearch has found differences in responding to various sensory stimuli among autistic individuals, which are associated with social and adaptive skills. However, our understanding of sensory profiles in autism has been complicated due to the variable presentation of sensory symptoms. One way to better understand variability in sensory symptoms is to use advanced statistical approaches, such as latent profile analysis, that allow for the identification of more similar sensory classes in otherwise variable groups. We used the Short Sensory Profile to identify homogeneous classes of sensory reactivity in autistic children based on both severity and modality and examined whether sensory classes differed in terms of autism characteristics, adaptive skills, and attention-deficit/hyperactivity disorder symptoms. Based on the pattern of both severity and modality, four sensory classes emerged and were named Moderate/Mixed (35.5%; probable-to-definite differences in all modalities except in movement sensitivity and low energy/weakness), Severe/Mixed (8.5%; definite sensory differences in all modalities except in low energy/weakness), Moderate/Broad (14.6%; probable-to-definite differences in all modalities), and Low/Mixed (41.1%; typical scores in most modalities with probable differences in taste/smell sensitivity, under-responsive/seeks sensation, and auditory filtering). The Severe/Mixed class exhibited greater problems in a variety of areas such as social, adaptive, and attention-deficit/hyperactivity disorder symptoms, whereas the Low/Mixed class showed overall fewer problems. This may provide insight for clinicians and researchers aiming to understand whether autistic children who exhibit distinct sensory patterns are more or less likely to also experience social, adaptive, and/or attention/behavior-related difficulties. En ligne : https://doi.org/10.1177/13623613221115951 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Patterns of sensory processing in young children with autism: Differences in autism characteristics, adaptive skills, and attentional problems [Texte imprimé et/ou numérique] / Girija KADLASKAR, Auteur ; Pin-Hsun MAO, Auteur ; Ana-Maria IOSIF, Auteur ; David AMARAL, Auteur ; Christine WU NORDAHL, Auteur ; Meghan MILLER, Auteur . - p.723-736. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.723-736 Mots-clés : autism spectrum disorders,latent profile analysis,sensory classes,sensory processing Index. décimale : PER Périodiques Résumé : Sensory processing differences are widely reported in autism. However, our understanding of sensory profiles in this population has been complicated due to the heterogeneous presentation of sensory symptoms. We addressed this by using latent profile analysis, allowing for the identification of more homogeneous sensory classes in a large cohort (n=211 (52 females), 2-4?years) of autistic children using subscale scores from the Short Sensory Profile. Based on the patterns of both severity and sensory modality, four classes emerged: Moderate/Mixed (35.5%), Severe/Mixed (8.5%), Moderate/Broad (14.6%), and Low/Mixed (41.1%). While a subset of children displayed normative sensory-related behaviors, the majority showed a combination of both hypo- and hyper-reactivity across various sensory modalities. Subsequent analyses showed that the class characterized by Severe/Mixed sensory differences exhibited greater problems in a variety of areas such as social and adaptive skills and attention-deficit/hyperactivity disorder symptoms, whereas the Low/Mixed class showed overall fewer problems. Identification of homogeneous classes may be useful for neurophysiological/imaging studies focusing on studying underlying mechanisms linked with specific sensory patterns. These findings may help clinicians identify children with particular sensory profiles that might relate to other social, adaptive, or behavioral domains with potential implications for intervention.Lay abstractResearch has found differences in responding to various sensory stimuli among autistic individuals, which are associated with social and adaptive skills. However, our understanding of sensory profiles in autism has been complicated due to the variable presentation of sensory symptoms. One way to better understand variability in sensory symptoms is to use advanced statistical approaches, such as latent profile analysis, that allow for the identification of more similar sensory classes in otherwise variable groups. We used the Short Sensory Profile to identify homogeneous classes of sensory reactivity in autistic children based on both severity and modality and examined whether sensory classes differed in terms of autism characteristics, adaptive skills, and attention-deficit/hyperactivity disorder symptoms. Based on the pattern of both severity and modality, four sensory classes emerged and were named Moderate/Mixed (35.5%; probable-to-definite differences in all modalities except in movement sensitivity and low energy/weakness), Severe/Mixed (8.5%; definite sensory differences in all modalities except in low energy/weakness), Moderate/Broad (14.6%; probable-to-definite differences in all modalities), and Low/Mixed (41.1%; typical scores in most modalities with probable differences in taste/smell sensitivity, under-responsive/seeks sensation, and auditory filtering). The Severe/Mixed class exhibited greater problems in a variety of areas such as social, adaptive, and attention-deficit/hyperactivity disorder symptoms, whereas the Low/Mixed class showed overall fewer problems. This may provide insight for clinicians and researchers aiming to understand whether autistic children who exhibit distinct sensory patterns are more or less likely to also experience social, adaptive, and/or attention/behavior-related difficulties. En ligne : https://doi.org/10.1177/13623613221115951 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Autistic experiences of applied behavior analysis / Laura K ANDERSON in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.737-750 Titre : Autistic experiences of applied behavior analysis Type de document : Texte imprimé et/ou numérique Auteurs : Laura K ANDERSON, Auteur Article en page(s) : p.737-750 Langues : Anglais (eng) Mots-clés : ABA,applied behavior analysis,autism,autistic experiences Index. décimale : PER Périodiques Résumé : Autism spectrum disorder is a developmental disability affecting individuals across their entire lifespan. Autistic individuals have differences from nonautistic people (sometimes called allistic or neurotypical people) in social skills, communication, and atypical interests and/or repetitive behaviors. Approximately 1 in 59 children are born autistic, leading to over 3.5 million autistic Americans. Applied behavior analysis is one of the first and most common interventions recommended for autistic children. However, autistic self-advocates argue that applied behavior analysis damages their mental health and treats them as though they are a problem to be fixed. This phenomenological qualitative study examined seven autistic individuals who received applied behavior analysis interventions as children to understand what autistic adults perceive as the costs and benefits of applied behavior analysis interventions, how they feel about the applied behavior analysis interventions they received, and what recommendations autistic adults have for the future of applied behavior analysis. The findings include: Autistic adults remember traumatic events from applied behavior analysis, do not believe that they should be made to behave like their peers, gained some benefits but suffered significant negative long-term consequences, believe that applied behavior analysis is an unethical intervention, and recommend that applied behavior analysis practitioners listen to autistic people and consider using interventions in place of applied behavior analysis.Lay AbstractAutism spectrum disorder is a developmental disability affecting individuals across their entire lifespan. Autistic individuals have differences from nonautistic people (sometimes called allistic or neurotypical people) in social skills, communication, and atypical interests and/or repetitive behaviors. Applied behavior analysis is one of the first and most common interventions recommended for autistic children. However, autistic individuals argue that applied behavior analysis damages their mental health and treats them as though they are a problem to be fixed. This study examined the experiences of seven autistic individuals who received applied behavior analysis interventions as children to understand what autistic adults think about their applied behavior analysis interventions, how they feel about the applied behavior analysis interventions they received, and what recommendations autistic adults have for the future of applied behavior analysis. The findings include: Autistic adults remember traumatic events from applied behavior analysis, do not believe that they should be made to behave like their peers, gained some benefits but suffered significant negative long-term consequences, believe that applied behavior analysis is an unethical intervention, and recommend that applied behavior analysis practitioners listen to autistic people and consider using interventions in place of applied behavior analysis. En ligne : https://doi.org/10.1177/13623613221118216 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Autistic experiences of applied behavior analysis [Texte imprimé et/ou numérique] / Laura K ANDERSON, Auteur . - p.737-750. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.737-750 Mots-clés : ABA,applied behavior analysis,autism,autistic experiences Index. décimale : PER Périodiques Résumé : Autism spectrum disorder is a developmental disability affecting individuals across their entire lifespan. Autistic individuals have differences from nonautistic people (sometimes called allistic or neurotypical people) in social skills, communication, and atypical interests and/or repetitive behaviors. Approximately 1 in 59 children are born autistic, leading to over 3.5 million autistic Americans. Applied behavior analysis is one of the first and most common interventions recommended for autistic children. However, autistic self-advocates argue that applied behavior analysis damages their mental health and treats them as though they are a problem to be fixed. This phenomenological qualitative study examined seven autistic individuals who received applied behavior analysis interventions as children to understand what autistic adults perceive as the costs and benefits of applied behavior analysis interventions, how they feel about the applied behavior analysis interventions they received, and what recommendations autistic adults have for the future of applied behavior analysis. The findings include: Autistic adults remember traumatic events from applied behavior analysis, do not believe that they should be made to behave like their peers, gained some benefits but suffered significant negative long-term consequences, believe that applied behavior analysis is an unethical intervention, and recommend that applied behavior analysis practitioners listen to autistic people and consider using interventions in place of applied behavior analysis.Lay AbstractAutism spectrum disorder is a developmental disability affecting individuals across their entire lifespan. Autistic individuals have differences from nonautistic people (sometimes called allistic or neurotypical people) in social skills, communication, and atypical interests and/or repetitive behaviors. Applied behavior analysis is one of the first and most common interventions recommended for autistic children. However, autistic individuals argue that applied behavior analysis damages their mental health and treats them as though they are a problem to be fixed. This study examined the experiences of seven autistic individuals who received applied behavior analysis interventions as children to understand what autistic adults think about their applied behavior analysis interventions, how they feel about the applied behavior analysis interventions they received, and what recommendations autistic adults have for the future of applied behavior analysis. The findings include: Autistic adults remember traumatic events from applied behavior analysis, do not believe that they should be made to behave like their peers, gained some benefits but suffered significant negative long-term consequences, believe that applied behavior analysis is an unethical intervention, and recommend that applied behavior analysis practitioners listen to autistic people and consider using interventions in place of applied behavior analysis. En ligne : https://doi.org/10.1177/13623613221118216 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Conducting caregiver focus groups on autism in the context of an international research collaboration: Logistical and methodological lessons learned in South Africa / Jessy GULER in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.751-761 Titre : Conducting caregiver focus groups on autism in the context of an international research collaboration: Logistical and methodological lessons learned in South Africa Type de document : Texte imprimé et/ou numérique Auteurs : Jessy GULER, Auteur ; Kearsley A STEWART, Auteur ; Petrus J DE VRIES, Auteur ; Noleen SERIS, Auteur ; Nokuthula SHABALALA, Auteur ; Lauren FRANZ, Auteur Article en page(s) : p.751-761 Langues : Anglais (eng) Mots-clés : autism spectrum disorders,caregivers,focus group discussions,logistical challenges,qualitative research,research ethics,research methods Index. décimale : PER Périodiques Résumé : Most autism research has been conducted in high-income countries, with participants typically from White, upper-middle-income families. Given the disparities experienced by autistic individuals living in underserved communities globally, there is a critical need for research to include individuals from culturally, linguistically, socioeconomically, and geographically diverse backgrounds to understand their unique needs. Qualitative research has the potential to describe the ''lived experience'' of families historically underrepresented in the autism literature. Here we describe the logistical and methodological challenges of conducting focus group discussions with 22 caregivers of young autistic children living in Cape Town, South Africa. Logistical challenges included (1) recruitment, (2) response rate, and (3) resource access. Methodological challenges included (1) participant background and experiences, (2) interpersonal dynamics, and (3) research ethics. We present recommendations based on lessons learned to reduce these challenges and improve rigorous qualitative research practices in similar low-resource contexts.Lay abstractMost of the autism research to date has been conducted in high-income countries, with children and families typically from White, upper-middle-income backgrounds. However, we know there are significant inequalities that exist which influence how autistic individuals from diverse, underserved communities can access services they need. As many of these individuals have not been included in the majority of autism research to date, there is much we do not know about these individuals' life experiences, which are critically needed to better inform the development and implementation of care for families from historically underrepresented groups. In this article, we describe the research process we took to conduct focus group discussions with 22 caregivers of young autistic children living in Cape Town, South Africa. We specifically describe the lessons we learned in implementing these focus groups and provide recommendations aimed at how to best reduce logistical and methodological challenges moving forward to improve research conducted in similar low-resource contexts. En ligne : https://doi.org/10.1177/13623613221117012 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Conducting caregiver focus groups on autism in the context of an international research collaboration: Logistical and methodological lessons learned in South Africa [Texte imprimé et/ou numérique] / Jessy GULER, Auteur ; Kearsley A STEWART, Auteur ; Petrus J DE VRIES, Auteur ; Noleen SERIS, Auteur ; Nokuthula SHABALALA, Auteur ; Lauren FRANZ, Auteur . - p.751-761. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.751-761 Mots-clés : autism spectrum disorders,caregivers,focus group discussions,logistical challenges,qualitative research,research ethics,research methods Index. décimale : PER Périodiques Résumé : Most autism research has been conducted in high-income countries, with participants typically from White, upper-middle-income families. Given the disparities experienced by autistic individuals living in underserved communities globally, there is a critical need for research to include individuals from culturally, linguistically, socioeconomically, and geographically diverse backgrounds to understand their unique needs. Qualitative research has the potential to describe the ''lived experience'' of families historically underrepresented in the autism literature. Here we describe the logistical and methodological challenges of conducting focus group discussions with 22 caregivers of young autistic children living in Cape Town, South Africa. Logistical challenges included (1) recruitment, (2) response rate, and (3) resource access. Methodological challenges included (1) participant background and experiences, (2) interpersonal dynamics, and (3) research ethics. We present recommendations based on lessons learned to reduce these challenges and improve rigorous qualitative research practices in similar low-resource contexts.Lay abstractMost of the autism research to date has been conducted in high-income countries, with children and families typically from White, upper-middle-income backgrounds. However, we know there are significant inequalities that exist which influence how autistic individuals from diverse, underserved communities can access services they need. As many of these individuals have not been included in the majority of autism research to date, there is much we do not know about these individuals' life experiences, which are critically needed to better inform the development and implementation of care for families from historically underrepresented groups. In this article, we describe the research process we took to conduct focus group discussions with 22 caregivers of young autistic children living in Cape Town, South Africa. We specifically describe the lessons we learned in implementing these focus groups and provide recommendations aimed at how to best reduce logistical and methodological challenges moving forward to improve research conducted in similar low-resource contexts. En ligne : https://doi.org/10.1177/13623613221117012 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Multimorbidity patterns and subgroups among autistic adults with intellectual disability: Results from the EFAAR study / Stéphanie MIOT in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.762-777 Titre : Multimorbidity patterns and subgroups among autistic adults with intellectual disability: Results from the EFAAR study Type de document : Texte imprimé et/ou numérique Auteurs : Stéphanie MIOT, Auteur ; Raphaël CHANCEL, Auteur ; Marianne PERIES, Auteur ; Sophie CREPIAT, Auteur ; Sylvie COUDERC, Auteur ; Eric PERNON, Auteur ; Marie-Christine PICOT, Auteur ; Véronique GONNIER, Auteur ; Claude JEANDEL, Auteur ; Hubert BLAIN, Auteur ; Amaria BAGHDADLI, Auteur Article en page(s) : p.762-777 Langues : Anglais (eng) Mots-clés : adults,autism spectrum disorder,intellectual disability,multimorbidity Index. décimale : PER Périodiques Résumé : Multimorbidity, defined as having two or more chronic health conditions, is associated with elevated polypharmacy and mortality. Autism spectrum disorder is a whole-body chronic health condition in which comorbidities - in particular co-occurring intellectual disability - contribute to high clinical heterogeneity, polypharmacy and premature mortality. We aimed to determine specific multimorbidity patterns among autism spectrum disorder?+?intellectual disability adults, and to identify participants' subgroups based on multimorbidity features. We used baseline examination data from a previous exploratory prospective multicentric study that included 63 autism spectrum disorder?+?intellectual disability adults. Multimorbidity patterns and subgroups were determined using clustering approaches. We observed 84.1% multimorbidity, significantly associated with age. We identified a dominant multimorbidity pattern, combining immune dysfunction, gastrointestinal disorders, neurological, and joint diseases. Four participants' subgroups could be distinguished by multimorbidity, autonomy and polypharmacy. Two clusters were distinguished by the prevalence and consequences of multimorbidity. One cluster involved women with endocrine disorders. The final cluster was composed of older adults with the lowest autism spectrum disorder severity but greater multimorbidity, including cardiovascular and kidney diseases. Our results support a role for the gut-brain axis in the pathophysiology of autism spectrum disorder?+?intellectual disability multimorbidity. Furthermore, we identified patient subgroups with specific needs, underscoring the importance of a holistic approach for autism spectrum disorder?+?intellectual disability adults.Lay abstractMultimorbidity relates to having multiple chronic health conditions. It is a risk factor for poor health and reduces life expectancy. Autistic people have multiple chronic health conditions and die prematurely, especially if they have an intellectual disability (autism spectrum disorder and intellectual disability). Certain pathophysiological processes observed in autism spectrum disorder are common to those related to the genesis and/or maintenance of multimorbidity. Furthermore, multimorbidity could be helpful in better identifying patient subgroups in autism spectrum disorder. It is therefore essential to better characterize multimorbidity and its consequences in the subgroup of autism spectrum disorder?+?intellectual disability individuals to offer them personalized care. We conducted a preliminary study of 63 autism spectrum disorder?+?intellectual disability adults to classify them according to their multimorbidity and search for a specific combination of chronic health conditions. We observed high and early multimorbidity in this sample and identified four classes of participants, distinguished by their multimorbidity status, independence and number of treatments. In addition, we observed a dominant combination of multimorbidity in our sample, combining immune dysfunction and gastrointestinal disorders, neurological and joint diseases. These findings support the hypothesis that an altered gut-brain relationship is involved in the risk of autism spectrum disorder, its outcome, and its association with chronic health conditions. Although larger studies are needed, our results suggest that subgroups of autism spectrum disorder?+?intellectual disability individuals can be identified based on their multimorbidity and potentially different ageing trajectories. A more comprehensive and personalized approach is needed to reduce the burden of multimorbidity and increase the quality of life and life expectancy in autism spectrum disorder/ intellectual disability. En ligne : https://doi.org/10.1177/13623613221121623 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Multimorbidity patterns and subgroups among autistic adults with intellectual disability: Results from the EFAAR study [Texte imprimé et/ou numérique] / Stéphanie MIOT, Auteur ; Raphaël CHANCEL, Auteur ; Marianne PERIES, Auteur ; Sophie CREPIAT, Auteur ; Sylvie COUDERC, Auteur ; Eric PERNON, Auteur ; Marie-Christine PICOT, Auteur ; Véronique GONNIER, Auteur ; Claude JEANDEL, Auteur ; Hubert BLAIN, Auteur ; Amaria BAGHDADLI, Auteur . - p.762-777. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.762-777 Mots-clés : adults,autism spectrum disorder,intellectual disability,multimorbidity Index. décimale : PER Périodiques Résumé : Multimorbidity, defined as having two or more chronic health conditions, is associated with elevated polypharmacy and mortality. Autism spectrum disorder is a whole-body chronic health condition in which comorbidities - in particular co-occurring intellectual disability - contribute to high clinical heterogeneity, polypharmacy and premature mortality. We aimed to determine specific multimorbidity patterns among autism spectrum disorder?+?intellectual disability adults, and to identify participants' subgroups based on multimorbidity features. We used baseline examination data from a previous exploratory prospective multicentric study that included 63 autism spectrum disorder?+?intellectual disability adults. Multimorbidity patterns and subgroups were determined using clustering approaches. We observed 84.1% multimorbidity, significantly associated with age. We identified a dominant multimorbidity pattern, combining immune dysfunction, gastrointestinal disorders, neurological, and joint diseases. Four participants' subgroups could be distinguished by multimorbidity, autonomy and polypharmacy. Two clusters were distinguished by the prevalence and consequences of multimorbidity. One cluster involved women with endocrine disorders. The final cluster was composed of older adults with the lowest autism spectrum disorder severity but greater multimorbidity, including cardiovascular and kidney diseases. Our results support a role for the gut-brain axis in the pathophysiology of autism spectrum disorder?+?intellectual disability multimorbidity. Furthermore, we identified patient subgroups with specific needs, underscoring the importance of a holistic approach for autism spectrum disorder?+?intellectual disability adults.Lay abstractMultimorbidity relates to having multiple chronic health conditions. It is a risk factor for poor health and reduces life expectancy. Autistic people have multiple chronic health conditions and die prematurely, especially if they have an intellectual disability (autism spectrum disorder and intellectual disability). Certain pathophysiological processes observed in autism spectrum disorder are common to those related to the genesis and/or maintenance of multimorbidity. Furthermore, multimorbidity could be helpful in better identifying patient subgroups in autism spectrum disorder. It is therefore essential to better characterize multimorbidity and its consequences in the subgroup of autism spectrum disorder?+?intellectual disability individuals to offer them personalized care. We conducted a preliminary study of 63 autism spectrum disorder?+?intellectual disability adults to classify them according to their multimorbidity and search for a specific combination of chronic health conditions. We observed high and early multimorbidity in this sample and identified four classes of participants, distinguished by their multimorbidity status, independence and number of treatments. In addition, we observed a dominant combination of multimorbidity in our sample, combining immune dysfunction and gastrointestinal disorders, neurological and joint diseases. These findings support the hypothesis that an altered gut-brain relationship is involved in the risk of autism spectrum disorder, its outcome, and its association with chronic health conditions. Although larger studies are needed, our results suggest that subgroups of autism spectrum disorder?+?intellectual disability individuals can be identified based on their multimorbidity and potentially different ageing trajectories. A more comprehensive and personalized approach is needed to reduce the burden of multimorbidity and increase the quality of life and life expectancy in autism spectrum disorder/ intellectual disability. En ligne : https://doi.org/10.1177/13623613221121623 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Short-term low-intensity Early Start Denver Model program implemented in regional hospitals in Northern Taiwan / Chung-Hsin CHIANG in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.778-787 Titre : Short-term low-intensity Early Start Denver Model program implemented in regional hospitals in Northern Taiwan Type de document : Texte imprimé et/ou numérique Auteurs : Chung-Hsin CHIANG, Auteur ; Tzu-Ling LIN, Auteur ; Hsiang-Yuan LIN, Auteur ; Suk Yin HO, Auteur ; Ching-Ching WONG, Auteur ; Hsin-Chi WU, Auteur Article en page(s) : p.778-787 Langues : Anglais (eng) Mots-clés : autism spectrum disorder,early intervention,Early Start Denver Model,low-intensity Index. décimale : PER Périodiques Résumé : The Early Start Denver Model is an evidence-based, comprehensive naturalistic developmental behavioral intervention for young and very young children with autism spectrum disorder. This interdisciplinary model is suitable for the Taiwanese public health system. In this study, we evaluated the effectiveness of an Early Start Denver Model program with adaptation, including a lower intensity, shorter duration, and delivery in general hospitals by multidisciplinary professionals. A quasi-experimental study with pre-, post-intervention, and 6-month follow-up was conducted. Forty-five young children with autism spectrum disorder, aged 2-4?years, were grouped into the Early Start Denver Model and control (the usual community treatment) groups. The Early Start Denver Model group received 6?months of one-on-one intervention for approximately 8-9?h per week. Compared with the control group, the Early Start Denver Model group showed greater improvements in overall development quotient and nonverbal development quotient from pre- to post-intervention, but these differences (a Group-by-Time interaction) did not sustain at the 6-month follow-up. Being mindful of some potential threats to internal validity associated with clinical trial designs and implementation, this study provides preliminary evidence to support the effectiveness of the Early Start Denver Model intervention in regional general hospital settings in the context of Han-Chinese-mainly culture.Lay AbstractThe Early Start Denver Model is an evidence-based early intervention program for young and very young children with autism. This interdisciplinary model is used by many types of professionals, such as psychologists, occupational therapists, speech pathologists, early child special educators, and paraprofessionals, as well as by parents. Most previous studies on the Early Start Denver Model were conducted in the West, and there are scarce studies on the topics of generalization in culture and countries outside the Western world. In this study, we evaluated the effect of the Early Start Denver Model with some adaptations, including a lower intensity, shorter duration, and delivery in regional general hospitals in Northern Taiwan. In total, 45 young children with autism, aged 2-4?years, were divided into the Early Start Denver Model and community-based control groups. The children in the Early Start Denver Model group received one-on-one intervention for approximately 8-9?h per week for 6?months. The results revealed that compared with the control group, the Early Start Denver Model group showed greater gains in overall development ability and nonverbal development ability from pre- to post-intervention. However, these differences did not sustain at the 6-month follow-up after the completion of the intervention. Being mindful of some caveats in trial designs, this study provides preliminary evidence to support the effectiveness of the Early Start Denver Model intervention in the regional general hospital settings in the context of Han-Chinese-mainly culture. Our findings can provide helpful information to stakeholders and policymakers of early intervention service systems for children with autism in Taiwan, as well as in Asian countries. En ligne : https://doi.org/10.1177/13623613221117444 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Short-term low-intensity Early Start Denver Model program implemented in regional hospitals in Northern Taiwan [Texte imprimé et/ou numérique] / Chung-Hsin CHIANG, Auteur ; Tzu-Ling LIN, Auteur ; Hsiang-Yuan LIN, Auteur ; Suk Yin HO, Auteur ; Ching-Ching WONG, Auteur ; Hsin-Chi WU, Auteur . - p.778-787. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.778-787 Mots-clés : autism spectrum disorder,early intervention,Early Start Denver Model,low-intensity Index. décimale : PER Périodiques Résumé : The Early Start Denver Model is an evidence-based, comprehensive naturalistic developmental behavioral intervention for young and very young children with autism spectrum disorder. This interdisciplinary model is suitable for the Taiwanese public health system. In this study, we evaluated the effectiveness of an Early Start Denver Model program with adaptation, including a lower intensity, shorter duration, and delivery in general hospitals by multidisciplinary professionals. A quasi-experimental study with pre-, post-intervention, and 6-month follow-up was conducted. Forty-five young children with autism spectrum disorder, aged 2-4?years, were grouped into the Early Start Denver Model and control (the usual community treatment) groups. The Early Start Denver Model group received 6?months of one-on-one intervention for approximately 8-9?h per week. Compared with the control group, the Early Start Denver Model group showed greater improvements in overall development quotient and nonverbal development quotient from pre- to post-intervention, but these differences (a Group-by-Time interaction) did not sustain at the 6-month follow-up. Being mindful of some potential threats to internal validity associated with clinical trial designs and implementation, this study provides preliminary evidence to support the effectiveness of the Early Start Denver Model intervention in regional general hospital settings in the context of Han-Chinese-mainly culture.Lay AbstractThe Early Start Denver Model is an evidence-based early intervention program for young and very young children with autism. This interdisciplinary model is used by many types of professionals, such as psychologists, occupational therapists, speech pathologists, early child special educators, and paraprofessionals, as well as by parents. Most previous studies on the Early Start Denver Model were conducted in the West, and there are scarce studies on the topics of generalization in culture and countries outside the Western world. In this study, we evaluated the effect of the Early Start Denver Model with some adaptations, including a lower intensity, shorter duration, and delivery in regional general hospitals in Northern Taiwan. In total, 45 young children with autism, aged 2-4?years, were divided into the Early Start Denver Model and community-based control groups. The children in the Early Start Denver Model group received one-on-one intervention for approximately 8-9?h per week for 6?months. The results revealed that compared with the control group, the Early Start Denver Model group showed greater gains in overall development ability and nonverbal development ability from pre- to post-intervention. However, these differences did not sustain at the 6-month follow-up after the completion of the intervention. Being mindful of some caveats in trial designs, this study provides preliminary evidence to support the effectiveness of the Early Start Denver Model intervention in the regional general hospital settings in the context of Han-Chinese-mainly culture. Our findings can provide helpful information to stakeholders and policymakers of early intervention service systems for children with autism in Taiwan, as well as in Asian countries. En ligne : https://doi.org/10.1177/13623613221117444 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

'Autistic person' or 'person with autism'? Person-first language preference in Dutch adults with autism and parents / Riley BUIJSMAN in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.788-795 Titre : 'Autistic person' or 'person with autism'? Person-first language preference in Dutch adults with autism and parents Type de document : Texte imprimé et/ou numérique Auteurs : Riley BUIJSMAN, Auteur ; Sander BEGEER, Auteur ; Anke M. SCHEEREN, Auteur Article en page(s) : p.788-795 Langues : Anglais (eng) Mots-clés : adults,advocacy,autism,identity-first language,person-first language,terminology Index. décimale : PER Périodiques Résumé : The language used to refer to autism has been a topic of ongoing debate. Research in English-speaking countries indicated an overall preference for identity-first language ('autistic person') among autistic adults rather than person-first language ('person with autism'). We examined terminology preference in Dutch autistic adults (n=1026; 16-84?years; 57% women) and parents of autistic children (n=286) via an online survey. A majority of self-reporting adults with autism (68.3%) and parents (82.5%) demonstrated a person-first language preference. A younger age, higher IQ and more autistic traits predicted a relatively stronger identity-first language preference in autistic adults. We conclude that language and culture may impact terminology preference of adults with autism and parents. For now, we advocate to use a mix of person-first language and identity-first language in academic papers to cover the full range of preferences.Lay abstractThere are different words to describe people with an autism diagnosis. For instance, we can put the person before autism (e.g. 'person with autism'), or we can put autism before the person (e.g. 'autistic person'). Previous research showed that autistic adults in English-speaking countries generally liked it better when autism is placed before the person. Yet, people also greatly differ in the words they like and dislike. In this study, we examined word preference in Dutch autistic adults (n=1026; 16-84?years; 57% women) and parents of autistic children (n=286). Via an online questionnaire, we asked our participants to select one term for autistic people that they liked best. The results showed that most adults with autism (68.3%) and parents (82.5%) preferred to put the person before autism. Younger adults, with a higher intelligence, and with more autistic traits, were a bit more likely to put autism before the person. We conclude that there are large differences in the words that people prefer. Because we found different results in our Dutch participants compared to participants in English-speaking countries, we think that the Dutch language or culture may also play a role in word preference. For now, we advise autism researchers to use both person-first and autism-first language. En ligne : https://doi.org/10.1177/13623613221117914 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] 'Autistic person' or 'person with autism'? Person-first language preference in Dutch adults with autism and parents [Texte imprimé et/ou numérique] / Riley BUIJSMAN, Auteur ; Sander BEGEER, Auteur ; Anke M. SCHEEREN, Auteur . - p.788-795. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.788-795 Mots-clés : adults,advocacy,autism,identity-first language,person-first language,terminology Index. décimale : PER Périodiques Résumé : The language used to refer to autism has been a topic of ongoing debate. Research in English-speaking countries indicated an overall preference for identity-first language ('autistic person') among autistic adults rather than person-first language ('person with autism'). We examined terminology preference in Dutch autistic adults (n=1026; 16-84?years; 57% women) and parents of autistic children (n=286) via an online survey. A majority of self-reporting adults with autism (68.3%) and parents (82.5%) demonstrated a person-first language preference. A younger age, higher IQ and more autistic traits predicted a relatively stronger identity-first language preference in autistic adults. We conclude that language and culture may impact terminology preference of adults with autism and parents. For now, we advocate to use a mix of person-first language and identity-first language in academic papers to cover the full range of preferences.Lay abstractThere are different words to describe people with an autism diagnosis. For instance, we can put the person before autism (e.g. 'person with autism'), or we can put autism before the person (e.g. 'autistic person'). Previous research showed that autistic adults in English-speaking countries generally liked it better when autism is placed before the person. Yet, people also greatly differ in the words they like and dislike. In this study, we examined word preference in Dutch autistic adults (n=1026; 16-84?years; 57% women) and parents of autistic children (n=286). Via an online questionnaire, we asked our participants to select one term for autistic people that they liked best. The results showed that most adults with autism (68.3%) and parents (82.5%) preferred to put the person before autism. Younger adults, with a higher intelligence, and with more autistic traits, were a bit more likely to put autism before the person. We conclude that there are large differences in the words that people prefer. Because we found different results in our Dutch participants compared to participants in English-speaking countries, we think that the Dutch language or culture may also play a role in word preference. For now, we advise autism researchers to use both person-first and autism-first language. En ligne : https://doi.org/10.1177/13623613221117914 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

The Autism-Spectrum Quotient-Hebrew version: Psychometric properties of a full and a short form, adapted for DSM-5 / Ofer GOLAN in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.796-807 Titre : The Autism-Spectrum Quotient-Hebrew version: Psychometric properties of a full and a short form, adapted for DSM-5 Type de document : Texte imprimé et/ou numérique Auteurs : Ofer GOLAN, Auteur ; Michael TERNER, Auteur ; Sandra ISRAEL-YAACOV, Auteur ; Carrie ALLISON, Auteur ; Simon BARON-COHEN, Auteur Article en page(s) : p.796-807 Langues : Anglais (eng) Mots-clés : adults,autism spectrum disorders,diagnosis,screening Index. décimale : PER Périodiques Résumé : The Autism-Spectrum Quotient is a self-report scale, used to assess autistic traits. It was tested cross-culturally, and a short version was created to clinically refer adults for an autism assessment. This study aimed to examine the properties of the Hebrew version of the Autism-Spectrum Quotient and to create a short version suitable for Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Ninety-three clinically diagnosed autistic adults (24 females) aged 18-53, and 147 comparable controls (34 females) completed the Hebrew version of the Autism-Spectrum Quotient. Ten clinicians specializing in diagnosing autism in adults classified the Autism-Spectrum Quotient?s items according to Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria. The Hebrew version of the Autism-Spectrum Quotient showed good internal consistency (Kuder-Richardson 20=0.90). Based on the prevalence of autism among clinically referred adults (70%), receiver operating characteristic analysis yielded area under the curve of 0.94. A cutoff of 21 demonstrated high sensitivity (0.90), specificity (0.76), positive predictive value (0.90), and negative predictive value (0.77). The short version of the Hebrew Autism-Spectrum Quotient included five social communication and five restricted, repetitive behavior items, which represented two social communication and two restricted, repetitive behavior criteria of Diagnostic and Statistical Manual of Mental Disorders (5th ed.). It showed good internal consistency (Kuder-Richardson 20=0.86), and receiver operating characteristic analysis yielded area under the curve of 0.95. An optimal clinical cutoff of five showed high sensitivity (0.90), specificity (0.82), positive predictive value (0.92), and negative predictive value (0.78). The Hebrew version of the Autism-Spectrum Quotient and the short version of the Hebrew Autism-Spectrum Quotient can be effectively used to help screen for autism in clinically referred adults.Lay AbstractDespite the attempt to diagnose autism at an early age, there are still many individuals who would only get an autism diagnosis in adulthood. For these adults, a questionnaire that could assist in highlighting their need to seek diagnostic assessment is needed. The Autism-Spectrum Quotient is a self-report scale used to assess autistic traits. It was tested cross-culturally, and a short version was recommended to help identify adults who should be referred for an autism assessment. However, its relevance for the up-to-date diagnostic criteria, according to the Diagnostic and Statistical Manual of Mental Disorders (5th ed.), has not been tested. This study aimed to examine the psychometric properties of the Hebrew version of the Autism-Spectrum Quotient and to create a short version of the Hebrew Autism-Spectrum Quotient, based on items which map on to Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria. Ninety-three autistic adults (24 females), aged 18-51, clinically diagnosed according to Diagnostic and Statistical Manual of Mental Disorders (5th ed.), and 147 comparable controls (34 females) filled out the Hebrew version of the Autism-Spectrum Quotient. Ten clinicians who specialize in diagnosing autism in adults classified the Autism-Spectrum Quotient?s items according to Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria. The short version of the Hebrew Autism-Spectrum Quotient comprised items that best differentiated between adults with and without autism, five items representing each of the Diagnostic and Statistical Manual of Mental Disorders (5th ed.) diagnostic domains. The overall probability for participants to be correctly classified as autistic or neurotypical was 86% for the Hebrew version of the Autism-Spectrum Quotient and 88% for the short version of the Hebrew Autism-Spectrum Quotient. We conclude that both versions are reliable and sensitive instruments that can help referring adults for autism assessment. En ligne : https://doi.org/10.1177/13623613221117020 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] The Autism-Spectrum Quotient-Hebrew version: Psychometric properties of a full and a short form, adapted for DSM-5 [Texte imprimé et/ou numérique] / Ofer GOLAN, Auteur ; Michael TERNER, Auteur ; Sandra ISRAEL-YAACOV, Auteur ; Carrie ALLISON, Auteur ; Simon BARON-COHEN, Auteur . - p.796-807. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.796-807 Mots-clés : adults,autism spectrum disorders,diagnosis,screening Index. décimale : PER Périodiques Résumé : The Autism-Spectrum Quotient is a self-report scale, used to assess autistic traits. It was tested cross-culturally, and a short version was created to clinically refer adults for an autism assessment. This study aimed to examine the properties of the Hebrew version of the Autism-Spectrum Quotient and to create a short version suitable for Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Ninety-three clinically diagnosed autistic adults (24 females) aged 18-53, and 147 comparable controls (34 females) completed the Hebrew version of the Autism-Spectrum Quotient. Ten clinicians specializing in diagnosing autism in adults classified the Autism-Spectrum Quotient?s items according to Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria. The Hebrew version of the Autism-Spectrum Quotient showed good internal consistency (Kuder-Richardson 20=0.90). Based on the prevalence of autism among clinically referred adults (70%), receiver operating characteristic analysis yielded area under the curve of 0.94. A cutoff of 21 demonstrated high sensitivity (0.90), specificity (0.76), positive predictive value (0.90), and negative predictive value (0.77). The short version of the Hebrew Autism-Spectrum Quotient included five social communication and five restricted, repetitive behavior items, which represented two social communication and two restricted, repetitive behavior criteria of Diagnostic and Statistical Manual of Mental Disorders (5th ed.). It showed good internal consistency (Kuder-Richardson 20=0.86), and receiver operating characteristic analysis yielded area under the curve of 0.95. An optimal clinical cutoff of five showed high sensitivity (0.90), specificity (0.82), positive predictive value (0.92), and negative predictive value (0.78). The Hebrew version of the Autism-Spectrum Quotient and the short version of the Hebrew Autism-Spectrum Quotient can be effectively used to help screen for autism in clinically referred adults.Lay AbstractDespite the attempt to diagnose autism at an early age, there are still many individuals who would only get an autism diagnosis in adulthood. For these adults, a questionnaire that could assist in highlighting their need to seek diagnostic assessment is needed. The Autism-Spectrum Quotient is a self-report scale used to assess autistic traits. It was tested cross-culturally, and a short version was recommended to help identify adults who should be referred for an autism assessment. However, its relevance for the up-to-date diagnostic criteria, according to the Diagnostic and Statistical Manual of Mental Disorders (5th ed.), has not been tested. This study aimed to examine the psychometric properties of the Hebrew version of the Autism-Spectrum Quotient and to create a short version of the Hebrew Autism-Spectrum Quotient, based on items which map on to Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria. Ninety-three autistic adults (24 females), aged 18-51, clinically diagnosed according to Diagnostic and Statistical Manual of Mental Disorders (5th ed.), and 147 comparable controls (34 females) filled out the Hebrew version of the Autism-Spectrum Quotient. Ten clinicians who specialize in diagnosing autism in adults classified the Autism-Spectrum Quotient?s items according to Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria. The short version of the Hebrew Autism-Spectrum Quotient comprised items that best differentiated between adults with and without autism, five items representing each of the Diagnostic and Statistical Manual of Mental Disorders (5th ed.) diagnostic domains. The overall probability for participants to be correctly classified as autistic or neurotypical was 86% for the Hebrew version of the Autism-Spectrum Quotient and 88% for the short version of the Hebrew Autism-Spectrum Quotient. We conclude that both versions are reliable and sensitive instruments that can help referring adults for autism assessment. En ligne : https://doi.org/10.1177/13623613221117020 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Women seeking an autism diagnosis in Australia: A qualitative exploration of factors that help and hinder / Sarah MURPHY in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.808-821 Titre : Women seeking an autism diagnosis in Australia: A qualitative exploration of factors that help and hinder Type de document : Texte imprimé et/ou numérique Auteurs : Sarah MURPHY, Auteur ; Rebecca L FLOWER, Auteur ; Rachel JELLETT, Auteur Article en page(s) : p.808-821 Langues : Anglais (eng) Mots-clés : adults,diagnosis,qualitative research Index. décimale : PER Périodiques Résumé : An autism diagnosis in adulthood can increase women?s self-compassion and inform appropriate supports. This study explored what helped and hindered autistic women when accessing an adulthood autism diagnosis in Australia. Ten autistic women diagnosed as adults within the past 5 years participated in a semi-structured interview about their experiences of accessing a diagnosis. Framework analysis was used to identify barriers and facilitators on person, provider and system levels. Person-level factors included women?s recognition of their autism, motivation, preparation, social support and approach during the assessment. Provider-level factors related to providers' level of knowledge and skill in working with autistic women, as well as the women?s experience of being dismissed or misdiagnosed. Interactions between person- and provider-level factors highlighted that the diagnostic process is relational. System-level factors included the requirements of the diagnostic process (time, financial costs, and technology) and the nature of diagnostic criteria and assessment tools used. These factors provided the context in which person-level and provider-level factors operated. The experiences of participants highlight improvements that could be made to accessing an adulthood autism diagnosis for women in Australia, including provider knowledge of the heterogeneity of autism and the development of resources to help autistic women prepare for their diagnostic assessment.Lay abstractAn autism diagnosis can have a big impact on women and make it possible to access support. This study explored women?s experiences of being diagnosed with autism as an adult in Australia, to try to understand what was helpful (facilitators) and unhelpful (barriers) for them during this process. We interviewed 10 autistic women who had been diagnosed in the last 5 years. Framework analysis was used to understand the data. We wanted to understand barriers and facilitators relating to the individual participants, the professionals they saw and the system they went through for their diagnostic assessment. Women reported that being able to recognise they were autistic, being motivated, preparing for the assessment, having social support and unmasking to be themselves were helpful during the diagnostic process. They reported that having a knowledgeable diagnostician who made accommodations for their needs assisted them during the assessment process. When providers dismissed the participants when they first raised the possibility they were autistic, it delayed them in seeking an assessment. At the system level, the women in this study found some aspects of the healthcare system difficult to navigate, particularly costs and long waitlists. Some found the assessment tools used were not well suited to them. The experiences of the women in this study highlight improvements that could be made to accessing an adulthood autism diagnosis in Australia. These include improving provider knowledge of the varied presentation of autism and the development of resources to help autistic women prepare for their diagnostic assessment. En ligne : https://doi.org/10.1177/13623613221117911 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Women seeking an autism diagnosis in Australia: A qualitative exploration of factors that help and hinder [Texte imprimé et/ou numérique] / Sarah MURPHY, Auteur ; Rebecca L FLOWER, Auteur ; Rachel JELLETT, Auteur . - p.808-821. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.808-821 Mots-clés : adults,diagnosis,qualitative research Index. décimale : PER Périodiques Résumé : An autism diagnosis in adulthood can increase women?s self-compassion and inform appropriate supports. This study explored what helped and hindered autistic women when accessing an adulthood autism diagnosis in Australia. Ten autistic women diagnosed as adults within the past 5 years participated in a semi-structured interview about their experiences of accessing a diagnosis. Framework analysis was used to identify barriers and facilitators on person, provider and system levels. Person-level factors included women?s recognition of their autism, motivation, preparation, social support and approach during the assessment. Provider-level factors related to providers' level of knowledge and skill in working with autistic women, as well as the women?s experience of being dismissed or misdiagnosed. Interactions between person- and provider-level factors highlighted that the diagnostic process is relational. System-level factors included the requirements of the diagnostic process (time, financial costs, and technology) and the nature of diagnostic criteria and assessment tools used. These factors provided the context in which person-level and provider-level factors operated. The experiences of participants highlight improvements that could be made to accessing an adulthood autism diagnosis for women in Australia, including provider knowledge of the heterogeneity of autism and the development of resources to help autistic women prepare for their diagnostic assessment.Lay abstractAn autism diagnosis can have a big impact on women and make it possible to access support. This study explored women?s experiences of being diagnosed with autism as an adult in Australia, to try to understand what was helpful (facilitators) and unhelpful (barriers) for them during this process. We interviewed 10 autistic women who had been diagnosed in the last 5 years. Framework analysis was used to understand the data. We wanted to understand barriers and facilitators relating to the individual participants, the professionals they saw and the system they went through for their diagnostic assessment. Women reported that being able to recognise they were autistic, being motivated, preparing for the assessment, having social support and unmasking to be themselves were helpful during the diagnostic process. They reported that having a knowledgeable diagnostician who made accommodations for their needs assisted them during the assessment process. When providers dismissed the participants when they first raised the possibility they were autistic, it delayed them in seeking an assessment. At the system level, the women in this study found some aspects of the healthcare system difficult to navigate, particularly costs and long waitlists. Some found the assessment tools used were not well suited to them. The experiences of the women in this study highlight improvements that could be made to accessing an adulthood autism diagnosis in Australia. These include improving provider knowledge of the varied presentation of autism and the development of resources to help autistic women prepare for their diagnostic assessment. En ligne : https://doi.org/10.1177/13623613221117911 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Autistics working in academia: What are the barriers and facilitators? / Sandra C JONES in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.822-831 Titre : Autistics working in academia: What are the barriers and facilitators? Type de document : Texte imprimé et/ou numérique Auteurs : Sandra C JONES, Auteur Article en page(s) : p.822-831 Langues : Anglais (eng) Mots-clés : employment,higher education,lived experience Index. décimale : PER Périodiques Résumé : Autistic people are under-represented in university student populations, but their numbers are growing, and the barriers to their inclusion are being recognised. Outside of the student body, autistic people in academia are often overlooked, although this is starting to change with the growth in inclusive autism research. However, they remain absent from the academic literature, despite the evident synergies between autistic strengths and academic careers. This study explored the perceptions of 37 autistic academics from various disciplines: what are the positives of working in academia for autistic people, and what are the negatives? Participants reported many positive aspects of an academic career, including the fit with the strengths, characteristics and motivations of autistic people. However, they also noted barriers and challenges - social, environmental and structural - many of which could be addressed by greater awareness and acceptance of autism. Given the considerable benefits that autistic teachers and researchers bring to higher education, there is a clear need for universities and colleges to implement changes to the physical and social environment to make academia more inclusive.Lay AbstractAcademia appears to provide an ideal career option for autistic people: the opportunity to lock ourselves away in an ivory tower and utilise our extensive knowledge of a very specific topic. We know autistic people are underrepresented in postsecondary education, and there is a growing body of research on how to make universities more inclusive. What is missing from the literature is the voices of autistic people who have survived the university experience and gone on to become university teachers and researchers. Increasing the visibility of autistics in academia, and exploring the barriers and facilitators they experience in an academic career, is important to raise the aspirations of future university students and graduates. This study included 37 autistic academics from various disciplines and countries, exploring their perceptions of the positive and negative aspects of being an autistic in academia. En ligne : https://doi.org/10.1177/13623613221118158 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Autistics working in academia: What are the barriers and facilitators? [Texte imprimé et/ou numérique] / Sandra C JONES, Auteur . - p.822-831. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.822-831 Mots-clés : employment,higher education,lived experience Index. décimale : PER Périodiques Résumé : Autistic people are under-represented in university student populations, but their numbers are growing, and the barriers to their inclusion are being recognised. Outside of the student body, autistic people in academia are often overlooked, although this is starting to change with the growth in inclusive autism research. However, they remain absent from the academic literature, despite the evident synergies between autistic strengths and academic careers. This study explored the perceptions of 37 autistic academics from various disciplines: what are the positives of working in academia for autistic people, and what are the negatives? Participants reported many positive aspects of an academic career, including the fit with the strengths, characteristics and motivations of autistic people. However, they also noted barriers and challenges - social, environmental and structural - many of which could be addressed by greater awareness and acceptance of autism. Given the considerable benefits that autistic teachers and researchers bring to higher education, there is a clear need for universities and colleges to implement changes to the physical and social environment to make academia more inclusive.Lay AbstractAcademia appears to provide an ideal career option for autistic people: the opportunity to lock ourselves away in an ivory tower and utilise our extensive knowledge of a very specific topic. We know autistic people are underrepresented in postsecondary education, and there is a growing body of research on how to make universities more inclusive. What is missing from the literature is the voices of autistic people who have survived the university experience and gone on to become university teachers and researchers. Increasing the visibility of autistics in academia, and exploring the barriers and facilitators they experience in an academic career, is important to raise the aspirations of future university students and graduates. This study included 37 autistic academics from various disciplines and countries, exploring their perceptions of the positive and negative aspects of being an autistic in academia. En ligne : https://doi.org/10.1177/13623613221118158 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Mental health of autistic adults during the COVID-19 pandemic: The impact of perceived stress, intolerance of uncertainty, and coping style / Kris EVERS in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.832-847 Titre : Mental health of autistic adults during the COVID-19 pandemic: The impact of perceived stress, intolerance of uncertainty, and coping style Type de document : Texte imprimé et/ou numérique Auteurs : Kris EVERS, Auteur ; Eef GIJBELS, Auteur ; Jarymke MALJAARS, Auteur ; Freya RUMBALL, Auteur ; Debbie SPAIN, Auteur ; Francesca HAPPE, Auteur ; Ilse NOENS, Auteur Article en page(s) : p.832-847 Langues : Anglais (eng) Mots-clés : adults,anxiety,autism,coping,depression,intolerance of uncertainty COVID-19 pandemic,perceived stress,questionnaire Index. décimale : PER Périodiques Résumé : Autistic individuals are at particular risk of experiencing mental health problems during the COVID-19 pandemic, yet little is known about personal characteristics that may underlie this vulnerability. This longitudinal questionnaire study with 149 autistic and 147 non-autistic adults investigated the association between perceived stress and anxiety and depressive symptoms, measured 4?months later. In addition, the moderating impact of intolerance of uncertainty and coping styles on this association was examined. Confirming previous studies, autistic adults reported poorer mental health than non-autistic individuals. Results demonstrated similar moderation models across individuals with versus without autism. Perceived stress at timepoint 1 was associated with anxiety and depression at timepoint 2. Across both participant groups, individuals with maladaptive coping strategies and higher levels of intolerance of uncertainty at timepoint 1 showed more internalizing symptoms at timepoint 2. The findings demonstrate the burden of the pandemic on the mental health of autistic adults, especially on those with high levels of perceived stress, maladaptive coping strategies, or intolerance of uncertainty. Interventions to support autistic adults during and after the pandemic might involve providing psychoeducation about the impact of stress, coping, and intolerance of uncertainty on internalizing symptoms, and teaching more adaptive ways to cope with difficult circumstances.Lay abstractMore and more research shows us that autistic individuals are at risk of experiencing mental health problems in response to the COVID-19 pandemic. However, little is known about why this is the case. At two timepoints during the pandemic, we asked 149 autistic and 147 non-autistic adults about feelings of anxiety, depression, and stress, and about characteristics that may explain why some (autistic) people have a larger chance of developing anxiety and depression during this pandemic. In our study, autistic adults experienced more anxiety and depression than non-autistic adults. Across autistic and non-autistic individuals, the people who experienced more stress at timepoint 1 experienced more anxiety and depression 4?months later. This was especially the case for those individuals who use maladaptive coping styles, such as denial or venting, and for those who have difficulties dealing with uncertain situations. Our findings show the burden of the COVID-19 pandemic on the mental health of autistic adults. Interventions to support autistic adults during and after the pandemic are needed, and they may want to focus on the negative impact of stress and teach autistic (and non-autistic) adults more adaptive ways to cope with stressful circumstances. En ligne : https://doi.org/10.1177/13623613221119749 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Mental health of autistic adults during the COVID-19 pandemic: The impact of perceived stress, intolerance of uncertainty, and coping style [Texte imprimé et/ou numérique] / Kris EVERS, Auteur ; Eef GIJBELS, Auteur ; Jarymke MALJAARS, Auteur ; Freya RUMBALL, Auteur ; Debbie SPAIN, Auteur ; Francesca HAPPE, Auteur ; Ilse NOENS, Auteur . - p.832-847. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.832-847 Mots-clés : adults,anxiety,autism,coping,depression,intolerance of uncertainty COVID-19 pandemic,perceived stress,questionnaire Index. décimale : PER Périodiques Résumé : Autistic individuals are at particular risk of experiencing mental health problems during the COVID-19 pandemic, yet little is known about personal characteristics that may underlie this vulnerability. This longitudinal questionnaire study with 149 autistic and 147 non-autistic adults investigated the association between perceived stress and anxiety and depressive symptoms, measured 4?months later. In addition, the moderating impact of intolerance of uncertainty and coping styles on this association was examined. Confirming previous studies, autistic adults reported poorer mental health than non-autistic individuals. Results demonstrated similar moderation models across individuals with versus without autism. Perceived stress at timepoint 1 was associated with anxiety and depression at timepoint 2. Across both participant groups, individuals with maladaptive coping strategies and higher levels of intolerance of uncertainty at timepoint 1 showed more internalizing symptoms at timepoint 2. The findings demonstrate the burden of the pandemic on the mental health of autistic adults, especially on those with high levels of perceived stress, maladaptive coping strategies, or intolerance of uncertainty. Interventions to support autistic adults during and after the pandemic might involve providing psychoeducation about the impact of stress, coping, and intolerance of uncertainty on internalizing symptoms, and teaching more adaptive ways to cope with difficult circumstances.Lay abstractMore and more research shows us that autistic individuals are at risk of experiencing mental health problems in response to the COVID-19 pandemic. However, little is known about why this is the case. At two timepoints during the pandemic, we asked 149 autistic and 147 non-autistic adults about feelings of anxiety, depression, and stress, and about characteristics that may explain why some (autistic) people have a larger chance of developing anxiety and depression during this pandemic. In our study, autistic adults experienced more anxiety and depression than non-autistic adults. Across autistic and non-autistic individuals, the people who experienced more stress at timepoint 1 experienced more anxiety and depression 4?months later. This was especially the case for those individuals who use maladaptive coping styles, such as denial or venting, and for those who have difficulties dealing with uncertain situations. Our findings show the burden of the COVID-19 pandemic on the mental health of autistic adults. Interventions to support autistic adults during and after the pandemic are needed, and they may want to focus on the negative impact of stress and teach autistic (and non-autistic) adults more adaptive ways to cope with stressful circumstances. En ligne : https://doi.org/10.1177/13623613221119749 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

The impact of a positive autism identity and autistic community solidarity on social anxiety and mental health in autistic young people / Kate COOPER in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.848-857 Titre : The impact of a positive autism identity and autistic community solidarity on social anxiety and mental health in autistic young people Type de document : Texte imprimé et/ou numérique Auteurs : Kate COOPER, Auteur ; Ailsa J RUSSELL, Auteur ; Jiedi LEI, Auteur ; Laura GE SMITH, Auteur Article en page(s) : p.848-857 Langues : Anglais (eng) Mots-clés : anxiety,autism identity,autism solidarity,autism spectrum disorders,autism strengths,psychological well-being,social anxiety,social identification Index. décimale : PER Périodiques Résumé : Autism is increasingly seen as a social identity, as well as a clinical diagnosis. Evidence suggests that autistic adults who have stronger autism social identification have better psychological well-being. Autism is a condition which impacts on social interactions, and so one?s sense of autism identification may be particularly important for reducing social anxiety, which is common in autistic adolescents. We aimed to investigate how the subcomponents of autism identification relate to social anxiety in autistic young people. We hypothesised that autistic young people who had a higher satisfaction with their autism identity, and more solidarity with other autistic people, would have better psychological well-being and lower social anxiety. 121 autistic young people between the ages of 15-22 completed questionnaires measuring self-reported autism traits, social anxiety, psychological well-being, and different components of autism social identification. We conducted regression analyses controlling for age, gender, and autism traits. We found that higher autism satisfaction was associated with higher psychological well-being and lower social anxiety. Young people with higher autism solidarity had higher psychological well-being, but there was no significant relationship between solidarity and social anxiety. We conclude that it is important to support autistic young people to develop autism social identification.Lay abstractAutism is a diagnosis given to individuals by professionals but is also increasingly seen as an identity which an individual can choose for themselves. We wanted to explore how having autism as an identity affects autistic young people. There is evidence that autistic adults have better psychological well-being when they feel more solidarity with other autistic people and feel positively about being autistic. We know that autistic teenagers often feel anxious in social situations. Having a positive autism identity might help alleviate social anxiety associated with being autistic. We wanted to find out if autistic young people who felt more solidarity with other autistic people, and had more positive feelings about autism, had better psychological well-being and less social anxiety. We asked 121 autistic people aged 15-22?years to complete some questionnaires. These questionnaires asked about the young person?s autism traits, social anxiety, and psychological well-being. The questionnaires also asked how satisfied they felt to be autistic (satisfaction) and how much solidarity they felt with the autism community (solidarity). We found that autistic young people who had higher autism satisfaction had better psychological well-being and lower social anxiety. Young people who felt more solidarity with other autistic people had higher psychological well-being. There was no association between autism solidarity and social anxiety. We conclude that is important to support autistic young people to develop positive feelings about autism and to feel solidarity with other autistic people. En ligne : https://doi.org/10.1177/13623613221118351 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] The impact of a positive autism identity and autistic community solidarity on social anxiety and mental health in autistic young people [Texte imprimé et/ou numérique] / Kate COOPER, Auteur ; Ailsa J RUSSELL, Auteur ; Jiedi LEI, Auteur ; Laura GE SMITH, Auteur . - p.848-857. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.848-857 Mots-clés : anxiety,autism identity,autism solidarity,autism spectrum disorders,autism strengths,psychological well-being,social anxiety,social identification Index. décimale : PER Périodiques Résumé : Autism is increasingly seen as a social identity, as well as a clinical diagnosis. Evidence suggests that autistic adults who have stronger autism social identification have better psychological well-being. Autism is a condition which impacts on social interactions, and so one?s sense of autism identification may be particularly important for reducing social anxiety, which is common in autistic adolescents. We aimed to investigate how the subcomponents of autism identification relate to social anxiety in autistic young people. We hypothesised that autistic young people who had a higher satisfaction with their autism identity, and more solidarity with other autistic people, would have better psychological well-being and lower social anxiety. 121 autistic young people between the ages of 15-22 completed questionnaires measuring self-reported autism traits, social anxiety, psychological well-being, and different components of autism social identification. We conducted regression analyses controlling for age, gender, and autism traits. We found that higher autism satisfaction was associated with higher psychological well-being and lower social anxiety. Young people with higher autism solidarity had higher psychological well-being, but there was no significant relationship between solidarity and social anxiety. We conclude that it is important to support autistic young people to develop autism social identification.Lay abstractAutism is a diagnosis given to individuals by professionals but is also increasingly seen as an identity which an individual can choose for themselves. We wanted to explore how having autism as an identity affects autistic young people. There is evidence that autistic adults have better psychological well-being when they feel more solidarity with other autistic people and feel positively about being autistic. We know that autistic teenagers often feel anxious in social situations. Having a positive autism identity might help alleviate social anxiety associated with being autistic. We wanted to find out if autistic young people who felt more solidarity with other autistic people, and had more positive feelings about autism, had better psychological well-being and less social anxiety. We asked 121 autistic people aged 15-22?years to complete some questionnaires. These questionnaires asked about the young person?s autism traits, social anxiety, and psychological well-being. The questionnaires also asked how satisfied they felt to be autistic (satisfaction) and how much solidarity they felt with the autism community (solidarity). We found that autistic young people who had higher autism satisfaction had better psychological well-being and lower social anxiety. Young people who felt more solidarity with other autistic people had higher psychological well-being. There was no association between autism solidarity and social anxiety. We conclude that is important to support autistic young people to develop positive feelings about autism and to feel solidarity with other autistic people. En ligne : https://doi.org/10.1177/13623613221118351 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Overcoming tensions between family-centered care and fidelity within Early Intervention implementation research / Katherine PICKARD in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.858-863 Titre : Overcoming tensions between family-centered care and fidelity within Early Intervention implementation research Type de document : Texte imprimé et/ou numérique Auteurs : Katherine PICKARD, Auteur ; Allison WAINER, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; R. Christopher SHELDRICK, Auteur ; Aubyn C. STAHMER, Auteur Article en page(s) : p.858-863 Langues : Anglais (eng) Mots-clés : autism spectrum disorders,early intervention,family-centered care,family functioning and support,fidelity,interventions-psychosocial/behavioral Index. décimale : PER Périodiques Résumé : The Part C Early Intervention system has been a focus of translational efforts in the autism field, as it is an entry point to services during a critical window of early development. Although Early Intervention systems are perceived as a promising setting in which to implement evidence-based practices for autism, implementation efforts seldom account for the unique service delivery model of Early Intervention systems, which emphasize family-centered care. The principles of family-centered care may at times pose tradeoffs to the implementation of manualized evidence-based practices and, thus, are pertinent to consider within implementation research being conducted within these systems. This commentary highlights family-centered care as an important factor of service delivery in Early Intervention systems that deserve greater attention. We lay out how family-centered care provides a framework for evaluating evidence-based practice adaptation in Early Intervention systems, how it may impact the adoption and implementation of evidence-based practices, and directions for future research to evaluate the impact of family-centered care alongside evidence-based practice delivery. Measuring family-centered care as part of research within Early Intervention systems may shift the autism field to a more balanced view of fidelity as both delivering core evidence-based practice components in a manner that closely align with fundamental tenants of Early Intervention systems.Lay AbstractEarly Intervention systems provide therapeutic services to families of young children birth to 3?years with developmental delays and are considered a natural access point to services for young children and their families. Research studies in the autism field have been interested in training providers to deliver evidence-based practices in Early Intervention systems to increase access to services for young children with an increased likelihood of being autistic. However, research has often overlooked that Early Intervention systems prioritize family-centered care, an approach to working with families that honors and respects their values and choices and that provides supports to strengthen family functioning. This commentary points out that family-centered care deserves greater attention in research being done in Early Intervention systems. We describe how family-centered care may shape how interventions are delivered, and discuss directions for future research to evaluate the impact of family-centered care alongside intervention delivery. En ligne : https://doi.org/10.1177/13623613221133641 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Overcoming tensions between family-centered care and fidelity within Early Intervention implementation research [Texte imprimé et/ou numérique] / Katherine PICKARD, Auteur ; Allison WAINER, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; R. Christopher SHELDRICK, Auteur ; Aubyn C. STAHMER, Auteur . - p.858-863. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.858-863 Mots-clés : autism spectrum disorders,early intervention,family-centered care,family functioning and support,fidelity,interventions-psychosocial/behavioral Index. décimale : PER Périodiques Résumé : The Part C Early Intervention system has been a focus of translational efforts in the autism field, as it is an entry point to services during a critical window of early development. Although Early Intervention systems are perceived as a promising setting in which to implement evidence-based practices for autism, implementation efforts seldom account for the unique service delivery model of Early Intervention systems, which emphasize family-centered care. The principles of family-centered care may at times pose tradeoffs to the implementation of manualized evidence-based practices and, thus, are pertinent to consider within implementation research being conducted within these systems. This commentary highlights family-centered care as an important factor of service delivery in Early Intervention systems that deserve greater attention. We lay out how family-centered care provides a framework for evaluating evidence-based practice adaptation in Early Intervention systems, how it may impact the adoption and implementation of evidence-based practices, and directions for future research to evaluate the impact of family-centered care alongside evidence-based practice delivery. Measuring family-centered care as part of research within Early Intervention systems may shift the autism field to a more balanced view of fidelity as both delivering core evidence-based practice components in a manner that closely align with fundamental tenants of Early Intervention systems.Lay AbstractEarly Intervention systems provide therapeutic services to families of young children birth to 3?years with developmental delays and are considered a natural access point to services for young children and their families. Research studies in the autism field have been interested in training providers to deliver evidence-based practices in Early Intervention systems to increase access to services for young children with an increased likelihood of being autistic. However, research has often overlooked that Early Intervention systems prioritize family-centered care, an approach to working with families that honors and respects their values and choices and that provides supports to strengthen family functioning. This commentary points out that family-centered care deserves greater attention in research being done in Early Intervention systems. We describe how family-centered care may shape how interventions are delivered, and discuss directions for future research to evaluate the impact of family-centered care alongside intervention delivery. En ligne : https://doi.org/10.1177/13623613221133641 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Perspective: The role of diversity advisory boards in autism research / Ed-Dee G WILLIAMS in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.864-869 Titre : Perspective: The role of diversity advisory boards in autism research Type de document : Texte imprimé et/ou numérique Auteurs : Ed-Dee G WILLIAMS, Auteur ; Matthew J SMITH, Auteur ; Brian BOYD, Auteur Article en page(s) : p.864-869 Langues : Anglais (eng) Mots-clés : autism spectrum disorders,community engagement,diversity,diversity boards Index. décimale : PER Périodiques Résumé : In this perspective, we argue that the regular use of diversity advisory boards in autism research will improve the inclusivity and participation of marginalized groups in autism research and intervention development. We define a diversity advisory board as a representative group of community members, scholars, policymakers, and area experts that specifically discuss and examine research and interventions for accurate representation and consideration of underrepresented and marginalized identities such as racial, gender, sexual minorities, and dis/abilities who are often excluded from the research process. We present three arguments for forming and integrating diversity advisory boards in autism research and intervention development. First, diversity advisory boards would encourage scholars and interventionists to be intentional in considering how their intervention will work for culturally, racially, gendered, and dis/ability diverse groups. Second, diversity advisory boards will lead to increased diverse samples of autistic participants if members of the board are incentivized to support recruitment efforts from their local communities and networks. Finally, the regular use of diversity advisory boards will improve the research-to-practice gap by including a wider range of community members in the early development and implementation of autism interventions. Recommended actions researchers could take to select, maintain, and meaningfully engage a diversity advisory board are included in this perspective.Lay abstractThis article argues that using groups of individuals that specifically focus on addressing issues with diversity in autism research and autism intervention development are key in ensuring that a greater amount of racial, ethnic, and gender diverse autistic individuals are included in the research and that the research is addressing the needs of these individuals and groups. We call these groups a diversity advisory board. A diversity advisory board will help improve diversity in autism research and intervention development by making sure that autism researchers (1) are intentional about addressing issues of diversity in their research and (2) are able to recruit a greater number of autistic individuals with diverse identities, and (3) by giving greater consideration to the context of diverse autistic individuals which will help autism-focused interventions work better in community settings. We give a short description of these arguments and ideas for how to form and use a diversity advisory board. En ligne : https://doi.org/10.1177/13623613221133633 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Perspective: The role of diversity advisory boards in autism research [Texte imprimé et/ou numérique] / Ed-Dee G WILLIAMS, Auteur ; Matthew J SMITH, Auteur ; Brian BOYD, Auteur . - p.864-869. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.864-869 Mots-clés : autism spectrum disorders,community engagement,diversity,diversity boards Index. décimale : PER Périodiques Résumé : In this perspective, we argue that the regular use of diversity advisory boards in autism research will improve the inclusivity and participation of marginalized groups in autism research and intervention development. We define a diversity advisory board as a representative group of community members, scholars, policymakers, and area experts that specifically discuss and examine research and interventions for accurate representation and consideration of underrepresented and marginalized identities such as racial, gender, sexual minorities, and dis/abilities who are often excluded from the research process. We present three arguments for forming and integrating diversity advisory boards in autism research and intervention development. First, diversity advisory boards would encourage scholars and interventionists to be intentional in considering how their intervention will work for culturally, racially, gendered, and dis/ability diverse groups. Second, diversity advisory boards will lead to increased diverse samples of autistic participants if members of the board are incentivized to support recruitment efforts from their local communities and networks. Finally, the regular use of diversity advisory boards will improve the research-to-practice gap by including a wider range of community members in the early development and implementation of autism interventions. Recommended actions researchers could take to select, maintain, and meaningfully engage a diversity advisory board are included in this perspective.Lay abstractThis article argues that using groups of individuals that specifically focus on addressing issues with diversity in autism research and autism intervention development are key in ensuring that a greater amount of racial, ethnic, and gender diverse autistic individuals are included in the research and that the research is addressing the needs of these individuals and groups. We call these groups a diversity advisory board. A diversity advisory board will help improve diversity in autism research and intervention development by making sure that autism researchers (1) are intentional about addressing issues of diversity in their research and (2) are able to recruit a greater number of autistic individuals with diverse identities, and (3) by giving greater consideration to the context of diverse autistic individuals which will help autism-focused interventions work better in community settings. We give a short description of these arguments and ideas for how to form and use a diversity advisory board. En ligne : https://doi.org/10.1177/13623613221133633 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499