Dépouillements

Embracing gestalt language development as a fundamental neurodiversity-affirmative practice / Amanda HAYDOCK in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1055-1059 Titre : Embracing gestalt language development as a fundamental neurodiversity-affirmative practice Type de document : Texte imprimé et/ou numérique Auteurs : Amanda HAYDOCK, Auteur ; Louisa HARRISON, Auteur ; Katy BALDWIN, Auteur ; Kathy LEADBITTER, Auteur Article en page(s) : p.1055-1059 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613241234598 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] Embracing gestalt language development as a fundamental neurodiversity-affirmative practice [Texte imprimé et/ou numérique] / Amanda HAYDOCK, Auteur ; Louisa HARRISON, Auteur ; Katy BALDWIN, Auteur ; Kathy LEADBITTER, Auteur . - p.1055-1059. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1055-1059 Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613241234598 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

The adult experience of being diagnosed with autism spectrum disorder: A qualitative meta-synthesis / Ingrid KIEHL in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1060-1074 Titre : The adult experience of being diagnosed with autism spectrum disorder: A qualitative meta-synthesis Type de document : Texte imprimé et/ou numérique Auteurs : Ingrid KIEHL, Auteur ; Ruby PEASE, Auteur ; Corinna HACKMANN, Auteur Article en page(s) : p.1060-1074 Langues : Anglais (eng) Mots-clés : adult  autism  autism spectrum disorder  ASD  diagnosis  mental health  qualitative Index. décimale : PER Périodiques Résumé : There is a dearth of research into the experience of adult diagnosis of autism spectrum disorder, and targeted research is needed to understand the needs of these adults. The aim of this coproduced review was to assess existing qualitative data on the lived experience of receiving an autism spectrum disorder diagnosis, identify recurring themes, and synthesize them into a visual model representing the journey through diagnosis. Using thematic analysis, we analyzed qualitative data from 24 studies of adult experiences of autism spectrum disorder diagnosis from PsycINFO, Embase, MEDLINE, and CINAHL. Thirty-two "descriptive" themes and three superordinate themes were identified. These themes represented how factors relating to identity and relationships are impacted by the diagnosis of autism spectrum disorder and the role of adaptation and assimilation. While the diagnostic process was confusing and disappointing for many, it often led to a sense of relief and clarity regarding past experiences. It created opportunities to connect with other autistic individuals and to access services, though appropriate supports were widely lacking. Recommendations are made that the diagnosis process explicitly considers needs in relation to: the impact of the diagnosis on identity, interactions with other people, choices regarding disclosure, and whether and how to make informed adaptations. Lay abstract There is little research looking at the experience of individuals diagnosed with autism spectrum disorder as adults. Adults diagnosed with autism spectrum disorder face different challenges than children, and more research is needed to better understand those challenges. For this review, autistic and non-autistic researchers looked at research on the experience of receiving a diagnosis of autism spectrum disorder as an adult. We looked for themes in people?s experience leading up to diagnosis, going through the diagnostic process, and living their life after diagnosis. We analyzed 24 studies and found three overarching themes that captured thirty-two themes describing the experience of diagnosis. The three overarching themes expressed issues with identity and relationships before and after the diagnosis and identified that the diagnosis of autism spectrum disorder in adulthood impacted people?s adaptation to and assimilation (i.e. the making sense of and internalizing the diagnosis) of autism spectrum disorder. While the diagnostic process itself was confusing and disappointing for many, it often led to a sense of relief and clarity regarding past experiences and had effects on identity and self-esteem. It created opportunities to connect with other autistic individuals and to access services, though appropriate supports were widely lacking. Recommendations are made that the impact of the diagnosis on people?s identity and choices about telling others about their diagnosis, and whether and how people want to make adaptations, should be discussed and thought through in the process of diagnosis. En ligne : https://dx.doi.org/10.1177/13623613231220419 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] The adult experience of being diagnosed with autism spectrum disorder: A qualitative meta-synthesis [Texte imprimé et/ou numérique] / Ingrid KIEHL, Auteur ; Ruby PEASE, Auteur ; Corinna HACKMANN, Auteur . - p.1060-1074. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1060-1074 Mots-clés : adult  autism  autism spectrum disorder  ASD  diagnosis  mental health  qualitative Index. décimale : PER Périodiques Résumé : There is a dearth of research into the experience of adult diagnosis of autism spectrum disorder, and targeted research is needed to understand the needs of these adults. The aim of this coproduced review was to assess existing qualitative data on the lived experience of receiving an autism spectrum disorder diagnosis, identify recurring themes, and synthesize them into a visual model representing the journey through diagnosis. Using thematic analysis, we analyzed qualitative data from 24 studies of adult experiences of autism spectrum disorder diagnosis from PsycINFO, Embase, MEDLINE, and CINAHL. Thirty-two "descriptive" themes and three superordinate themes were identified. These themes represented how factors relating to identity and relationships are impacted by the diagnosis of autism spectrum disorder and the role of adaptation and assimilation. While the diagnostic process was confusing and disappointing for many, it often led to a sense of relief and clarity regarding past experiences. It created opportunities to connect with other autistic individuals and to access services, though appropriate supports were widely lacking. Recommendations are made that the diagnosis process explicitly considers needs in relation to: the impact of the diagnosis on identity, interactions with other people, choices regarding disclosure, and whether and how to make informed adaptations. Lay abstract There is little research looking at the experience of individuals diagnosed with autism spectrum disorder as adults. Adults diagnosed with autism spectrum disorder face different challenges than children, and more research is needed to better understand those challenges. For this review, autistic and non-autistic researchers looked at research on the experience of receiving a diagnosis of autism spectrum disorder as an adult. We looked for themes in people?s experience leading up to diagnosis, going through the diagnostic process, and living their life after diagnosis. We analyzed 24 studies and found three overarching themes that captured thirty-two themes describing the experience of diagnosis. The three overarching themes expressed issues with identity and relationships before and after the diagnosis and identified that the diagnosis of autism spectrum disorder in adulthood impacted people?s adaptation to and assimilation (i.e. the making sense of and internalizing the diagnosis) of autism spectrum disorder. While the diagnostic process itself was confusing and disappointing for many, it often led to a sense of relief and clarity regarding past experiences and had effects on identity and self-esteem. It created opportunities to connect with other autistic individuals and to access services, though appropriate supports were widely lacking. Recommendations are made that the impact of the diagnosis on people?s identity and choices about telling others about their diagnosis, and whether and how people want to make adaptations, should be discussed and thought through in the process of diagnosis. En ligne : https://dx.doi.org/10.1177/13623613231220419 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

Post-traumatic stress disorder and experiences involving violence or sexual abuse in a clinical sample of autistic adults with intellectual disabilities: Prevalence and clinical correlates / Arvid Nikolai KILDAHL in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1075-1089 Titre : Post-traumatic stress disorder and experiences involving violence or sexual abuse in a clinical sample of autistic adults with intellectual disabilities: Prevalence and clinical correlates Type de document : Texte imprimé et/ou numérique Auteurs : Arvid Nikolai KILDAHL, Auteur ; Sissel Berge HELVERSCHOU, Auteur Article en page(s) : p.1075-1089 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  intellectual disabilities  post-traumatic stress disorder  sexual abuse  trauma  violence Index. décimale : PER Périodiques Résumé : Autistic people appear to be at increased risk of post-traumatic stress disorder, and experiences involving violence or sexual abuse appear to be common in this population. However, knowledge concerning trauma in autistic people with co-occurring intellectual disabilities is limited. In this cross-sectional study, we explored the prevalence of post-traumatic stress disorder, as well as the prevalence and clinical correlates of reported experiences of violence and sexual abuse, in a clinical sample of 88 autistic adults with intellectual disabilities referred for mental health assessment. Only three participants (3.4%) were diagnosed with post-traumatic stress disorder, even if experiences involving violence (34.1%) or sexual abuse (17.0%) were common. Anxiety and affective disorders were common diagnoses among participants with these experiences. Controlling for autism characteristics, level of intellectual disability and communication skills, experiences of violence/sexual abuse were found to be associated with a measure of 'challenging' behaviours (Aberrant Behaviour Checklist). These results indicate that potentially traumatic experiences are common in autistic adults with intellectual disabilities referred for mental health assessment and that post-traumatic stress disorder may be under-recognised. The findings highlight the importance of trauma screening and post-traumatic stress disorder assessment, as well as the importance of trauma-informed care, in this population. Lay abstract Post-traumatic stress disorder is a mental health disorder that may be triggered by the experience of events perceived as terrifying or overwhelming. Examples of such events include being the victim of violence or sexual abuse. Compared with other people, autistic people have increased risk of being exposed to violence or sexual abuse. In addition, autistic people may be more vulnerable to developing post-traumatic stress disorder following such exposure. However, knowledge is limited concerning the prevalence of experiences involving violence and sexual abuse, and post-traumatic stress disorder, in autistic people with co-occurring intellectual disabilities. Detection of these experiences, and identification of post-traumatic stress disorder, may be challenging in these individuals, and previous research indicates that post-traumatic stress disorder symptoms may be overlooked or misinterpreted. In this study, we examined prevalence of post-traumatic stress disorder, violence and sexual abuse in a clinical sample of 88 autistic adults with intellectual disabilities referred for mental health assessment. Only 3.4% were diagnosed with post-traumatic stress disorder, even if experiences involving violence (34.1%) or sexual abuse (17.0%) were common. Anxiety and affective disorders were common diagnoses among participants with these experiences. Controlling for autism characteristics, level of intellectual disability and communication skills, experiences of violence/sexual abuse were found to be associated with a measure of 'challenging' behaviours. These results indicate that potentially traumatic experiences are common in autistic adults with intellectual disabilities referred for mental health assessment, and that post-traumatic stress disorder may be under-recognised. The findings highlight the importance of trauma screening and post-traumatic stress disorder assessment, as well as the importance of trauma-informed care, in this population. En ligne : https://dx.doi.org/10.1177/13623613231190948 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] Post-traumatic stress disorder and experiences involving violence or sexual abuse in a clinical sample of autistic adults with intellectual disabilities: Prevalence and clinical correlates [Texte imprimé et/ou numérique] / Arvid Nikolai KILDAHL, Auteur ; Sissel Berge HELVERSCHOU, Auteur . - p.1075-1089. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1075-1089 Mots-clés : autism spectrum disorders  intellectual disabilities  post-traumatic stress disorder  sexual abuse  trauma  violence Index. décimale : PER Périodiques Résumé : Autistic people appear to be at increased risk of post-traumatic stress disorder, and experiences involving violence or sexual abuse appear to be common in this population. However, knowledge concerning trauma in autistic people with co-occurring intellectual disabilities is limited. In this cross-sectional study, we explored the prevalence of post-traumatic stress disorder, as well as the prevalence and clinical correlates of reported experiences of violence and sexual abuse, in a clinical sample of 88 autistic adults with intellectual disabilities referred for mental health assessment. Only three participants (3.4%) were diagnosed with post-traumatic stress disorder, even if experiences involving violence (34.1%) or sexual abuse (17.0%) were common. Anxiety and affective disorders were common diagnoses among participants with these experiences. Controlling for autism characteristics, level of intellectual disability and communication skills, experiences of violence/sexual abuse were found to be associated with a measure of 'challenging' behaviours (Aberrant Behaviour Checklist). These results indicate that potentially traumatic experiences are common in autistic adults with intellectual disabilities referred for mental health assessment and that post-traumatic stress disorder may be under-recognised. The findings highlight the importance of trauma screening and post-traumatic stress disorder assessment, as well as the importance of trauma-informed care, in this population. Lay abstract Post-traumatic stress disorder is a mental health disorder that may be triggered by the experience of events perceived as terrifying or overwhelming. Examples of such events include being the victim of violence or sexual abuse. Compared with other people, autistic people have increased risk of being exposed to violence or sexual abuse. In addition, autistic people may be more vulnerable to developing post-traumatic stress disorder following such exposure. However, knowledge is limited concerning the prevalence of experiences involving violence and sexual abuse, and post-traumatic stress disorder, in autistic people with co-occurring intellectual disabilities. Detection of these experiences, and identification of post-traumatic stress disorder, may be challenging in these individuals, and previous research indicates that post-traumatic stress disorder symptoms may be overlooked or misinterpreted. In this study, we examined prevalence of post-traumatic stress disorder, violence and sexual abuse in a clinical sample of 88 autistic adults with intellectual disabilities referred for mental health assessment. Only 3.4% were diagnosed with post-traumatic stress disorder, even if experiences involving violence (34.1%) or sexual abuse (17.0%) were common. Anxiety and affective disorders were common diagnoses among participants with these experiences. Controlling for autism characteristics, level of intellectual disability and communication skills, experiences of violence/sexual abuse were found to be associated with a measure of 'challenging' behaviours. These results indicate that potentially traumatic experiences are common in autistic adults with intellectual disabilities referred for mental health assessment, and that post-traumatic stress disorder may be under-recognised. The findings highlight the importance of trauma screening and post-traumatic stress disorder assessment, as well as the importance of trauma-informed care, in this population. En ligne : https://dx.doi.org/10.1177/13623613231190948 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

Autistic adults' experiences of financial wellbeing: Part II / Elizabeth PELLICANO in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1090-1106 Titre : Autistic adults' experiences of financial wellbeing: Part II Type de document : Texte imprimé et/ou numérique Auteurs : Elizabeth PELLICANO, Auteur ; Gabrielle HALL, Auteur ; Ru YING CAI, Auteur Article en page(s) : p.1090-1106 Langues : Anglais (eng) Mots-clés : employment  income  mental health  money  quality of life Index. décimale : PER Périodiques Résumé : Financial wellbeing is an important component of people?s overall wellbeing, reflecting the capacity to live a comfortable and fulfilling life. Yet virtually nothing is known about this topic for autistic people. This study addressed this gap using a two-phase sequential mixed-methods design. Here, we report on findings from the Phase 2 qualitative study. In this study, 21 autistic participants were purposively selected based on the status of their financial wellbeing, including 12 people with high, and 9 with low, financial wellbeing, and interviewed by an autistic researcher. We identified four themes through reflective thematic analysis. Having access to a stable income made an enormous difference to people?s financial wellbeing. Participants emphasised how their broader social supports, especially family support, shaped their financial wellbeing. Yet, planning financially was often challenging, especially for people who had insufficient money to meet their basic needs. Nevertheless, our participants reported a strong drive to stay in control and avoid unnecessary risk. Our findings revealed how much money matters in autistic people?s lives. Future research should investigate the ways in which autistic people could secure more reliable incomes and identify the most effective ways to support them to achieve financial resilience. Lay abstract Money matters in people?s lives. It helps to meet people?s basic needs (food, clothes, shelter) and live the lives they want to. When people talk about 'financial wellbeing', they mean how much you feel in control over day-to-day finances and how much freedom you have to make choices to enjoy life. We don?t know what autistic people think about these things. That?s why we did our study. We spoke to 21 autistic adults (24-69?years) about how they felt about their financial situation. We deliberately spoke to people who had told us previously they felt 'financially well' or 'financially unwell' so we could hear a range of opinions. Autistic people told us financial wellbeing meant having enough money to pay for their basics needs, to have a safety net for unexpected bills and not having to worry about money now or in the future. But many felt that good financial wellbeing was not possible for them. They often did not have a stable income to cover day-to-day expenses. This limited the choices they could make. Despite these challenges, autistic people told us they worked hard to budget and save money when they could - because feeling financial insecure was just too stressful, especially when they could not rely on family or friends for support. It made them feel mentally unwell. Our study shows there are many factors that influence autistic people?s financial wellbeing. We need more research to help us understand how autistic people can be supported to achieve financial security. En ligne : https://dx.doi.org/10.1177/13623613231191594 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] Autistic adults' experiences of financial wellbeing: Part II [Texte imprimé et/ou numérique] / Elizabeth PELLICANO, Auteur ; Gabrielle HALL, Auteur ; Ru YING CAI, Auteur . - p.1090-1106. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1090-1106 Mots-clés : employment  income  mental health  money  quality of life Index. décimale : PER Périodiques Résumé : Financial wellbeing is an important component of people?s overall wellbeing, reflecting the capacity to live a comfortable and fulfilling life. Yet virtually nothing is known about this topic for autistic people. This study addressed this gap using a two-phase sequential mixed-methods design. Here, we report on findings from the Phase 2 qualitative study. In this study, 21 autistic participants were purposively selected based on the status of their financial wellbeing, including 12 people with high, and 9 with low, financial wellbeing, and interviewed by an autistic researcher. We identified four themes through reflective thematic analysis. Having access to a stable income made an enormous difference to people?s financial wellbeing. Participants emphasised how their broader social supports, especially family support, shaped their financial wellbeing. Yet, planning financially was often challenging, especially for people who had insufficient money to meet their basic needs. Nevertheless, our participants reported a strong drive to stay in control and avoid unnecessary risk. Our findings revealed how much money matters in autistic people?s lives. Future research should investigate the ways in which autistic people could secure more reliable incomes and identify the most effective ways to support them to achieve financial resilience. Lay abstract Money matters in people?s lives. It helps to meet people?s basic needs (food, clothes, shelter) and live the lives they want to. When people talk about 'financial wellbeing', they mean how much you feel in control over day-to-day finances and how much freedom you have to make choices to enjoy life. We don?t know what autistic people think about these things. That?s why we did our study. We spoke to 21 autistic adults (24-69?years) about how they felt about their financial situation. We deliberately spoke to people who had told us previously they felt 'financially well' or 'financially unwell' so we could hear a range of opinions. Autistic people told us financial wellbeing meant having enough money to pay for their basics needs, to have a safety net for unexpected bills and not having to worry about money now or in the future. But many felt that good financial wellbeing was not possible for them. They often did not have a stable income to cover day-to-day expenses. This limited the choices they could make. Despite these challenges, autistic people told us they worked hard to budget and save money when they could - because feeling financial insecure was just too stressful, especially when they could not rely on family or friends for support. It made them feel mentally unwell. Our study shows there are many factors that influence autistic people?s financial wellbeing. We need more research to help us understand how autistic people can be supported to achieve financial security. En ligne : https://dx.doi.org/10.1177/13623613231191594 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

'Most people have no idea what autism is': Unpacking autism disclosure using social media analysis / Chris EDWARDS in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1107-1119 Titre : 'Most people have no idea what autism is': Unpacking autism disclosure using social media analysis Type de document : Texte imprimé et/ou numérique Auteurs : Chris EDWARDS, Auteur ; Abigail M.A. LOVE, Auteur ; Sandra C. JONES, Auteur ; Ru Ying CAI, Auteur ; Boyd Thai Hoang NGUYEN, Auteur ; Vicki GIBBS, Auteur Article en page(s) : p.1107-1119 Langues : Anglais (eng) Mots-clés : autistic adults  disclosure  discrimination  qualitative research  social media  stigma Index. décimale : PER Périodiques Résumé : Autism disclosure can be a complicated decision that autistic people experience. Positive outcomes can include feelings of acceptance and support, but negative outcomes can include stigma and discrimination. Although a surge in research on this topic has led to more understanding around autism disclosure, the methodologies used may have limited who was contributing to the conversation and data. To overcome this, we analyzed 3 years (2020?2022) of social media data (Reddit and Twitter) as this was public information that did not rely on researcher data collection. Reflexive thematic analysis of 3121 posts led to the generation of four themes: People do not understand autism (with experiences related to employment, dating, healthcare and mental health), autistic people just want privacy and respect, autistic people can lead us forward and non-autistic people need to assume more responsibility. We discuss how autistic adults experience the impact of society?s lack of understanding of autism on a daily basis whether they disclose or not, and that it is everybody?s responsibility to challenge negative stereotypes and promote a more inclusive society. Lay abstract Autism disclosure - that is sharing their autism diagnosis or identity with a person or people - is a difficult decision for many autistic people. While telling people they are autistic can be positive and helpful, it can also create a lot of problems. What we have learnt is that disclosure is really complicated. Rather than asking research participants questions about what might happen, we looked at what people were saying on public social media posts (Reddit and Twitter) about what did happen. We used three years of posts that were related to autism disclosure from a wide range of adults (autistic and non-autistic). Four main ideas were created from our data, with the key finding being that society does not understand autism. This lack of understanding creates problems for autistic people in work, dating, healthcare and mental health. The remaining ideas were that autistic people should have privacy and be treated with respect, that autistic representation can help society and that non-autistic people need to do more to help autistic people. Our findings support that society needs to do more through autism advocacy, better media representation and more public role models. Increasing the accuracy of understanding of autism across society will mean that autistic people can feel safer to disclose if they want to. En ligne : https://dx.doi.org/10.1177/13623613231192133 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] 'Most people have no idea what autism is': Unpacking autism disclosure using social media analysis [Texte imprimé et/ou numérique] / Chris EDWARDS, Auteur ; Abigail M.A. LOVE, Auteur ; Sandra C. JONES, Auteur ; Ru Ying CAI, Auteur ; Boyd Thai Hoang NGUYEN, Auteur ; Vicki GIBBS, Auteur . - p.1107-1119. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1107-1119 Mots-clés : autistic adults  disclosure  discrimination  qualitative research  social media  stigma Index. décimale : PER Périodiques Résumé : Autism disclosure can be a complicated decision that autistic people experience. Positive outcomes can include feelings of acceptance and support, but negative outcomes can include stigma and discrimination. Although a surge in research on this topic has led to more understanding around autism disclosure, the methodologies used may have limited who was contributing to the conversation and data. To overcome this, we analyzed 3 years (2020?2022) of social media data (Reddit and Twitter) as this was public information that did not rely on researcher data collection. Reflexive thematic analysis of 3121 posts led to the generation of four themes: People do not understand autism (with experiences related to employment, dating, healthcare and mental health), autistic people just want privacy and respect, autistic people can lead us forward and non-autistic people need to assume more responsibility. We discuss how autistic adults experience the impact of society?s lack of understanding of autism on a daily basis whether they disclose or not, and that it is everybody?s responsibility to challenge negative stereotypes and promote a more inclusive society. Lay abstract Autism disclosure - that is sharing their autism diagnosis or identity with a person or people - is a difficult decision for many autistic people. While telling people they are autistic can be positive and helpful, it can also create a lot of problems. What we have learnt is that disclosure is really complicated. Rather than asking research participants questions about what might happen, we looked at what people were saying on public social media posts (Reddit and Twitter) about what did happen. We used three years of posts that were related to autism disclosure from a wide range of adults (autistic and non-autistic). Four main ideas were created from our data, with the key finding being that society does not understand autism. This lack of understanding creates problems for autistic people in work, dating, healthcare and mental health. The remaining ideas were that autistic people should have privacy and be treated with respect, that autistic representation can help society and that non-autistic people need to do more to help autistic people. Our findings support that society needs to do more through autism advocacy, better media representation and more public role models. Increasing the accuracy of understanding of autism across society will mean that autistic people can feel safer to disclose if they want to. En ligne : https://dx.doi.org/10.1177/13623613231192133 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

Enhancing stakeholder roles in autism early interventions in the United States: A stakeholder-driven research agenda / Katherine M. WALTON in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1120-1134 Titre : Enhancing stakeholder roles in autism early interventions in the United States: A stakeholder-driven research agenda Type de document : Texte imprimé et/ou numérique Auteurs : Katherine M. WALTON, Auteur ; Alayna R. BOROWY, Auteur ; Rachel A. GORDON, Auteur ; Allison L. WAINER, Auteur Article en page(s) : p.1120-1134 Langues : Anglais (eng) Mots-clés : early intervention  neurodiversity  research agenda  stakeholder consultation Index. décimale : PER Périodiques Résumé : This article outlines a stakeholder-created research agenda to guide future early intervention research for autistic children. We collaborated with 10 autism service providers, 10 parents of individuals with autism, and 10 autistic people across a total of 18 small group and 2 inter-group meetings occurring over 2?years. Together, we synthesized results from (1) these stakeholder workshops and (2) a survey completed by 237 autistic adults, autism providers, caregivers, and autism researchers in the United States. The finalized research agenda includes (1) Guiding Principles, (2) Research Priorities, and (3) Systems Implications. The full version of the early intervention autism research agenda is available in Supplemental Material. In this article, we summarize the main points of the research agenda and discuss unique themes highlighted by stakeholders in considering early autism intervention research. Finally, we highlight the need to include stakeholders in decision-making and consultant positions throughout the research process to align future work most directly and optimally with the goals and needs of the autism community. We have gathered guidance directly from our stakeholders and experiences with Project Stakeholders Engaging in Early Intervention Research (STEER) into a researcher workbook which we hope may facilitate these efforts. This workbook is available in Supplemental Material. Lay abstract In this article, we outline a stakeholder-driven research agenda to guide future early intervention research for children with autism. Our research team collaborated with autism service providers, parents of individuals with autism, and autistic people to create this research agenda by (1) conducting workshops with community members and (2) distributing a survey to a larger number of community members around the country. The finalized research agenda includes (1) Guiding Principles for current and future research, (2) Research Priorities focused on early intervention for individuals with autism, and (3) Systems Implications to consider in future clinical, research, and policy efforts for early intervention. The full version of the research agenda is available in Supplemental Material. This article lists the main points of the research agenda and discusses unique themes highlighted by the community members. One main conclusion is that researchers need to include community members in decision-making and consultant positions throughout the research process to best meet the needs of the broader autism community. We have created a researcher workbook which we hope may facilitate these community consultation efforts. This workbook is available in Supplemental Material. En ligne : https://dx.doi.org/10.1177/13623613231195743 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] Enhancing stakeholder roles in autism early interventions in the United States: A stakeholder-driven research agenda [Texte imprimé et/ou numérique] / Katherine M. WALTON, Auteur ; Alayna R. BOROWY, Auteur ; Rachel A. GORDON, Auteur ; Allison L. WAINER, Auteur . - p.1120-1134. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1120-1134 Mots-clés : early intervention  neurodiversity  research agenda  stakeholder consultation Index. décimale : PER Périodiques Résumé : This article outlines a stakeholder-created research agenda to guide future early intervention research for autistic children. We collaborated with 10 autism service providers, 10 parents of individuals with autism, and 10 autistic people across a total of 18 small group and 2 inter-group meetings occurring over 2?years. Together, we synthesized results from (1) these stakeholder workshops and (2) a survey completed by 237 autistic adults, autism providers, caregivers, and autism researchers in the United States. The finalized research agenda includes (1) Guiding Principles, (2) Research Priorities, and (3) Systems Implications. The full version of the early intervention autism research agenda is available in Supplemental Material. In this article, we summarize the main points of the research agenda and discuss unique themes highlighted by stakeholders in considering early autism intervention research. Finally, we highlight the need to include stakeholders in decision-making and consultant positions throughout the research process to align future work most directly and optimally with the goals and needs of the autism community. We have gathered guidance directly from our stakeholders and experiences with Project Stakeholders Engaging in Early Intervention Research (STEER) into a researcher workbook which we hope may facilitate these efforts. This workbook is available in Supplemental Material. Lay abstract In this article, we outline a stakeholder-driven research agenda to guide future early intervention research for children with autism. Our research team collaborated with autism service providers, parents of individuals with autism, and autistic people to create this research agenda by (1) conducting workshops with community members and (2) distributing a survey to a larger number of community members around the country. The finalized research agenda includes (1) Guiding Principles for current and future research, (2) Research Priorities focused on early intervention for individuals with autism, and (3) Systems Implications to consider in future clinical, research, and policy efforts for early intervention. The full version of the research agenda is available in Supplemental Material. This article lists the main points of the research agenda and discusses unique themes highlighted by the community members. One main conclusion is that researchers need to include community members in decision-making and consultant positions throughout the research process to best meet the needs of the broader autism community. We have created a researcher workbook which we hope may facilitate these community consultation efforts. This workbook is available in Supplemental Material. En ligne : https://dx.doi.org/10.1177/13623613231195743 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

Using adaptive behavior scores to convey level of functioning in children with autism spectrum disorder: Evidence from the Study to Explore Early Development / Sarah M. FURNIER in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1135-1149 Titre : Using adaptive behavior scores to convey level of functioning in children with autism spectrum disorder: Evidence from the Study to Explore Early Development Type de document : Texte imprimé et/ou numérique Auteurs : Sarah M. FURNIER, Auteur ; Susan ELLIS WEISMER, Auteur ; Eric RUBENSTEIN, Auteur ; Ronald GANGNON, Auteur ; Steven ROSENBERG, Auteur ; Cy NADLER, Auteur ; Lisa D. WIGGINS, Auteur ; Maureen S. DURKIN, Auteur Article en page(s) : p.1135-1149 Langues : Anglais (eng) Mots-clés : adaptive behavior  adaptive functioning  autism spectrum disorders  cognitive development  epidemiology  intelligence quotient Index. décimale : PER Périodiques Résumé : We examined relationships between measures of adaptive behavior, cognitive ability, and autism symptom severity in 1458 preschool-aged children with autism from the Study to Explore Early Development. While publications commonly describe autistic children as "low-" or "high-functioning" based on cognitive ability, relying solely on cognitive scores may obscure meaningful variation in functioning. We found significant heterogeneity in adaptive behavior scores of children with cognitive scores both above and below the threshold of two or more standard deviations below the population mean specified in the diagnostic criteria for intellectual disability (ID). Although cognitive and adaptive behavior scores were strongly associated in our sample, considerable variation in overall adaptive behavior and more than half in socialization and motor skills was unaccounted for by cognitive ability, autism symptom severity, and other covariates. Among children who could be designated "low-functioning" based on cognitive scores, 39.7% had composite adaptive behavior scores indicating no significant delays, while among those who might be designated "high-functioning," 9.0% had significant delays in overall adaptive behavior and 22.2% in socialization. These results suggest adaptive behavior scores capture variations in the autism phenotype not accounted for by other measures we considered. Lay Abstract Autistic people are often described as "low-" or "high-functioning" based on their scores on cognitive tests. These terms are common in publications and in everyday communication. However, recent research and feedback from the autistic community suggests that relying on cognitive ability alone to describe functioning may miss meaningful differences in the abilities of autistic children and adults and in the kinds of support they may need. Additional methods are needed to describe "functioning" in autistic children. We examined whether scores from a test measuring adaptive behaviors would provide information on the functional abilities of children with autism that is different from cognitive ability and autism symptom severity. Adaptive behaviors include age-appropriate skills that allow people to function in their everyday lives and social interactions. We found that a large amount of the variation in adaptive behavior scores was not explained by cognitive development, autism symptom severity, and behavioral and emotional problems. In addition, there was a wide range of adaptive ability levels in children with autism in our study, including in those with low, average, or high cognitive scores. Our results suggest that adaptive behavior scores could provide useful information about the strengths and support needs of autistic children above and beyond measures of cognitive ability and autism symptom severity. Adaptive behavior scores provide important information on the needs of autistic people. En ligne : https://dx.doi.org/10.1177/13623613231193194 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] Using adaptive behavior scores to convey level of functioning in children with autism spectrum disorder: Evidence from the Study to Explore Early Development [Texte imprimé et/ou numérique] / Sarah M. FURNIER, Auteur ; Susan ELLIS WEISMER, Auteur ; Eric RUBENSTEIN, Auteur ; Ronald GANGNON, Auteur ; Steven ROSENBERG, Auteur ; Cy NADLER, Auteur ; Lisa D. WIGGINS, Auteur ; Maureen S. DURKIN, Auteur . - p.1135-1149. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1135-1149 Mots-clés : adaptive behavior  adaptive functioning  autism spectrum disorders  cognitive development  epidemiology  intelligence quotient Index. décimale : PER Périodiques Résumé : We examined relationships between measures of adaptive behavior, cognitive ability, and autism symptom severity in 1458 preschool-aged children with autism from the Study to Explore Early Development. While publications commonly describe autistic children as "low-" or "high-functioning" based on cognitive ability, relying solely on cognitive scores may obscure meaningful variation in functioning. We found significant heterogeneity in adaptive behavior scores of children with cognitive scores both above and below the threshold of two or more standard deviations below the population mean specified in the diagnostic criteria for intellectual disability (ID). Although cognitive and adaptive behavior scores were strongly associated in our sample, considerable variation in overall adaptive behavior and more than half in socialization and motor skills was unaccounted for by cognitive ability, autism symptom severity, and other covariates. Among children who could be designated "low-functioning" based on cognitive scores, 39.7% had composite adaptive behavior scores indicating no significant delays, while among those who might be designated "high-functioning," 9.0% had significant delays in overall adaptive behavior and 22.2% in socialization. These results suggest adaptive behavior scores capture variations in the autism phenotype not accounted for by other measures we considered. Lay Abstract Autistic people are often described as "low-" or "high-functioning" based on their scores on cognitive tests. These terms are common in publications and in everyday communication. However, recent research and feedback from the autistic community suggests that relying on cognitive ability alone to describe functioning may miss meaningful differences in the abilities of autistic children and adults and in the kinds of support they may need. Additional methods are needed to describe "functioning" in autistic children. We examined whether scores from a test measuring adaptive behaviors would provide information on the functional abilities of children with autism that is different from cognitive ability and autism symptom severity. Adaptive behaviors include age-appropriate skills that allow people to function in their everyday lives and social interactions. We found that a large amount of the variation in adaptive behavior scores was not explained by cognitive development, autism symptom severity, and behavioral and emotional problems. In addition, there was a wide range of adaptive ability levels in children with autism in our study, including in those with low, average, or high cognitive scores. Our results suggest that adaptive behavior scores could provide useful information about the strengths and support needs of autistic children above and beyond measures of cognitive ability and autism symptom severity. Adaptive behavior scores provide important information on the needs of autistic people. En ligne : https://dx.doi.org/10.1177/13623613231193194 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

Specific interests as a social boundary and bridge: A qualitative interview study with autistic individuals / Marie LIZON in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1150-1160 Titre : Specific interests as a social boundary and bridge: A qualitative interview study with autistic individuals Type de document : Texte imprimé et/ou numérique Auteurs : Marie LIZON, Auteur ; Liesbeth TAELS, Auteur ; Stijn VANHEULE, Auteur Article en page(s) : p.1150-1160 Langues : Anglais (eng) Mots-clés : autism  grounded theory  interpretative phenomenological analysis  qualitative research  social participation  specific interests Index. décimale : PER Périodiques Résumé : Autistic individuals often experience challenges in social communication and interaction, and there is growing evidence that specific interests can help them regulate these difficulties. However, it is unclear what specific properties of these interests make them suitable for this role. In this qualitative study, we conducted semi-structured interviews with nine autistic individuals to explore the social functions of their specific interests. Data analysis followed Grounded Theory and Interpretative Phenomenological Analysis principles. Our analysis revealed that these interests have two important functions in social communication and interaction. On one hand, they provide a means of disconnecting from the often-distressing challenges in the social outside world. On the other hand, specific interests serve as a social compass: they provide structure and meaning to social reality, can foster a sense of connection with others, and provide an entryway for social participation. Based on these findings, we propose a conceptual model suggesting that specific interests enhance the experience of a psychological boundary between oneself and others, which contributes to a sense of safety during social interactions. Our study suggests that incorporating specific interests into therapeutic interventions can improve the social communication and interaction of autistic individuals, without losing sight of their personal well-being. Lay abstract Growing evidence shows that specific interests can help autistic individuals cope with difficulties in social communication and interaction. However, it is unclear which specific characteristics of these interests make them suitable for this coping role. Therefore, this study explored how specific interests can help autistic individuals navigate social communication and interaction. We conducted semi-structured interviews with nine autistic individuals to inquire about their perspectives on the meanings and functions of their specific interest in their (social) life. We found that specific interests served two important social functions. First, the interests provided a way to disconnect from the challenging outside world, through a shift in the attentional focus of participants. Second, the interests served as a "social compass," providing structure and meaning to social situations and helping the participants feel more connected to others. Based on these findings, we propose a conceptual model suggesting that specific interests create the experience of a "protective boundary" between oneself and others, which helps autistic individuals feel safe during social interactions. Namely, engaging in specific interests not only creates a space where autistic individuals can retreat when they feel overwhelmed, but also provides a framework with delineations in time and space, as well as explicit rules for social interactions, which make them more predictable and regulated. The study suggests that incorporating specific interests into therapy can help improve social communication and interaction for autistic individuals while still prioritizing their personal well-being. En ligne : https://dx.doi.org/10.1177/13623613231193532 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] Specific interests as a social boundary and bridge: A qualitative interview study with autistic individuals [Texte imprimé et/ou numérique] / Marie LIZON, Auteur ; Liesbeth TAELS, Auteur ; Stijn VANHEULE, Auteur . - p.1150-1160. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1150-1160 Mots-clés : autism  grounded theory  interpretative phenomenological analysis  qualitative research  social participation  specific interests Index. décimale : PER Périodiques Résumé : Autistic individuals often experience challenges in social communication and interaction, and there is growing evidence that specific interests can help them regulate these difficulties. However, it is unclear what specific properties of these interests make them suitable for this role. In this qualitative study, we conducted semi-structured interviews with nine autistic individuals to explore the social functions of their specific interests. Data analysis followed Grounded Theory and Interpretative Phenomenological Analysis principles. Our analysis revealed that these interests have two important functions in social communication and interaction. On one hand, they provide a means of disconnecting from the often-distressing challenges in the social outside world. On the other hand, specific interests serve as a social compass: they provide structure and meaning to social reality, can foster a sense of connection with others, and provide an entryway for social participation. Based on these findings, we propose a conceptual model suggesting that specific interests enhance the experience of a psychological boundary between oneself and others, which contributes to a sense of safety during social interactions. Our study suggests that incorporating specific interests into therapeutic interventions can improve the social communication and interaction of autistic individuals, without losing sight of their personal well-being. Lay abstract Growing evidence shows that specific interests can help autistic individuals cope with difficulties in social communication and interaction. However, it is unclear which specific characteristics of these interests make them suitable for this coping role. Therefore, this study explored how specific interests can help autistic individuals navigate social communication and interaction. We conducted semi-structured interviews with nine autistic individuals to inquire about their perspectives on the meanings and functions of their specific interest in their (social) life. We found that specific interests served two important social functions. First, the interests provided a way to disconnect from the challenging outside world, through a shift in the attentional focus of participants. Second, the interests served as a "social compass," providing structure and meaning to social situations and helping the participants feel more connected to others. Based on these findings, we propose a conceptual model suggesting that specific interests create the experience of a "protective boundary" between oneself and others, which helps autistic individuals feel safe during social interactions. Namely, engaging in specific interests not only creates a space where autistic individuals can retreat when they feel overwhelmed, but also provides a framework with delineations in time and space, as well as explicit rules for social interactions, which make them more predictable and regulated. The study suggests that incorporating specific interests into therapy can help improve social communication and interaction for autistic individuals while still prioritizing their personal well-being. En ligne : https://dx.doi.org/10.1177/13623613231193532 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

Fewer children with autism spectrum disorder with motor challenges receive physical and recreational therapies compared to standard therapies: A SPARK data set analysis / Anjana N. BHAT in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1161-1174 Titre : Fewer children with autism spectrum disorder with motor challenges receive physical and recreational therapies compared to standard therapies: A SPARK data set analysis Type de document : Texte imprimé et/ou numérique Auteurs : Anjana N. BHAT, Auteur Article en page(s) : p.1161-1174 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  developmental coordination disorder  motor difficulties  motor services  occupational therapy  physical therapy  recreational therapy Index. décimale : PER Périodiques Résumé : Approximately 85% of children with autism spectrum disorder from the SPARK study receiving standard interventions such as speech-language and occupational therapies. In contrast, only 32%-13% of children with autism spectrum disorder received movement therapies such as physical and recreational therapies, respectively. Little is known about how service receipt changes as a function of children?s motor difficulties. Parents of children with autism spectrum disorder completed online surveys to provide a report of their child?s motor difficulties using the Developmental Coordination Disorder-Questionnaire as well as the various therapies their child received (speech-language therapy, occupational therapy, physical therapy, applied behavioral analysis, social skill interventions, recreational therapy) by location (at school, privately/in community, or both). While movement therapies (occupational therapy, physical therapy, recreational therapy) increased with increasing motor risk and severity, there continued to be large disparities in physical therapy (37%-55%) and recreational therapy (15%-19%) compared to occupational therapy (85%-92%) across various settings indicating clear unmet needs for specific motor services given that 88.3% of this sample of children with autism spectrum disorder is at risk for motor difficulties/Developmental Coordination Disorder. Developmental Coordination Disorder-Questionnaire fine- and gross-motor subscale scores were fairly comparably affected yet physical therapy/recreational therapy were less received versus occupational therapy. These findings explain the paucity of physical therapy/recreational therapy and physical activity programs for individuals with autism spectrum disorder and the need for movement experts to receive appropriate access and training to work with individuals with autism spectrum disorder. Lay Abstract There are clear disparities in motor services provided to children with autism spectrum disorder (physical and recreational therapies) compared to their standard therapies (speech-language and occupational therapies). Children with autism spectrum disorder need greater access to and funding for motor services (physical and recreational therapies) and physical activity programs. Movement experts including PTs, adapted physical educators, and community exercise/sports coaches/professionals need basic, specialized, and continuing education training to meet the needs of children and adults with autism spectrum disorder not only for providing early developmental and school-based services but also for ensuring appropriate built environments and providing general physical therapy/adapted physical education services as well as physical activity programs. En ligne : https://dx.doi.org/10.1177/13623613231193196 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] Fewer children with autism spectrum disorder with motor challenges receive physical and recreational therapies compared to standard therapies: A SPARK data set analysis [Texte imprimé et/ou numérique] / Anjana N. BHAT, Auteur . - p.1161-1174. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1161-1174 Mots-clés : autism spectrum disorder  developmental coordination disorder  motor difficulties  motor services  occupational therapy  physical therapy  recreational therapy Index. décimale : PER Périodiques Résumé : Approximately 85% of children with autism spectrum disorder from the SPARK study receiving standard interventions such as speech-language and occupational therapies. In contrast, only 32%-13% of children with autism spectrum disorder received movement therapies such as physical and recreational therapies, respectively. Little is known about how service receipt changes as a function of children?s motor difficulties. Parents of children with autism spectrum disorder completed online surveys to provide a report of their child?s motor difficulties using the Developmental Coordination Disorder-Questionnaire as well as the various therapies their child received (speech-language therapy, occupational therapy, physical therapy, applied behavioral analysis, social skill interventions, recreational therapy) by location (at school, privately/in community, or both). While movement therapies (occupational therapy, physical therapy, recreational therapy) increased with increasing motor risk and severity, there continued to be large disparities in physical therapy (37%-55%) and recreational therapy (15%-19%) compared to occupational therapy (85%-92%) across various settings indicating clear unmet needs for specific motor services given that 88.3% of this sample of children with autism spectrum disorder is at risk for motor difficulties/Developmental Coordination Disorder. Developmental Coordination Disorder-Questionnaire fine- and gross-motor subscale scores were fairly comparably affected yet physical therapy/recreational therapy were less received versus occupational therapy. These findings explain the paucity of physical therapy/recreational therapy and physical activity programs for individuals with autism spectrum disorder and the need for movement experts to receive appropriate access and training to work with individuals with autism spectrum disorder. Lay Abstract There are clear disparities in motor services provided to children with autism spectrum disorder (physical and recreational therapies) compared to their standard therapies (speech-language and occupational therapies). Children with autism spectrum disorder need greater access to and funding for motor services (physical and recreational therapies) and physical activity programs. Movement experts including PTs, adapted physical educators, and community exercise/sports coaches/professionals need basic, specialized, and continuing education training to meet the needs of children and adults with autism spectrum disorder not only for providing early developmental and school-based services but also for ensuring appropriate built environments and providing general physical therapy/adapted physical education services as well as physical activity programs. En ligne : https://dx.doi.org/10.1177/13623613231193196 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

Comparison of network structures between autistic and non-autistic adults, and autism subgroups: A focus on demographic, psychological, and lifestyle factors / Tulsi A. RADHOE in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1175-1189 Titre : Comparison of network structures between autistic and non-autistic adults, and autism subgroups: A focus on demographic, psychological, and lifestyle factors Type de document : Texte imprimé et/ou numérique Auteurs : Tulsi A. RADHOE, Auteur ; Joost A. Agelink VAN RENTERGEM, Auteur ; Carolien TORENVLIET, Auteur ; Annabeth P. GROENMAN, Auteur ; Wikke J. VAN DER PUTTEN, Auteur ; Hilde M. GEURTS, Auteur Article en page(s) : p.1175-1189 Langues : Anglais (eng) Mots-clés : adults  autism  network analysis  quality of life  subgroups  subtypes Index. décimale : PER Périodiques Résumé : Differences in (autism) characteristics are often reported between autistic and non-autistic adults but also between autistic adults. We aimed to determine whether mean differences correspond to differences in network structure of these characteristics in (1) autistic and non-autistic adults and (2) two previously identified autism subgroups. A total of 16 network variables related to demographic and psychological characteristics were included. First, Gaussian Graphical Models (GGMs) were used for network estimation in 261 autistic adults and 384 non-autistic comparisons aged 30-85?years. Second, we repeated this step within two previously identified autism subgroups (N1 = 124, N2 = 130). Third, sex differences were explored in the networks of the autism subgroups. The networks of the autism and comparison groups differed on individual edges and visual inspection, although the Network Comparison Test (NCT) showed no overall differences. The networks of autism subgroups were similar based on visual inspection and statistical comparisons. Sex did not impact the subgroup networks differently. Networks were more similar than different, but observed edge differences could be informative for targeted support. Focusing on mean differences is not sufficient to determine which factors (and associations) are important for autistic people. Thus, network analysis provides a valuable tool beyond assessing mean differences for autistic adults. Lay Abstract There are large differences in the level of demographic, psychological, and lifestyle characteristics between autistic and non-autistic adults but also among autistic people. Our goal was to test whether these differences correspond to differences in underlying relationships between these characteristics-also referred to as network structure-to determine which characteristics (and relationships between them) are important. We tested differences in network structure in (1) autistic and non-autistic adults and (2) two previously identified subgroups of autistic adults. We showed that comparing networks of autistic and non-autistic adults provides subtle differences, whereas networks of the autism subgroups were similar. There were also no sex differences in the networks of the autism subgroups. Thus, the previously observed differences in the level of characteristics did not correspond to differences across subgroups in how these characteristics relate to one another (i.e. network structure). Consequently, a focus on differences in characteristics is not sufficient to determine which characteristics (and relationships between them) are of importance. Hence, network analysis provides a valuable tool beyond looking at (sub)group level differences. These results could provide hints for clinical practice, to eventually determine whether psychological distress, cognitive failures, and reduced quality of life in autistic adults can be addressed by tailored support. However, it is important that these results are first replicated before we move toward intervention or support. En ligne : https://dx.doi.org/10.1177/13623613231198544 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] Comparison of network structures between autistic and non-autistic adults, and autism subgroups: A focus on demographic, psychological, and lifestyle factors [Texte imprimé et/ou numérique] / Tulsi A. RADHOE, Auteur ; Joost A. Agelink VAN RENTERGEM, Auteur ; Carolien TORENVLIET, Auteur ; Annabeth P. GROENMAN, Auteur ; Wikke J. VAN DER PUTTEN, Auteur ; Hilde M. GEURTS, Auteur . - p.1175-1189. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1175-1189 Mots-clés : adults  autism  network analysis  quality of life  subgroups  subtypes Index. décimale : PER Périodiques Résumé : Differences in (autism) characteristics are often reported between autistic and non-autistic adults but also between autistic adults. We aimed to determine whether mean differences correspond to differences in network structure of these characteristics in (1) autistic and non-autistic adults and (2) two previously identified autism subgroups. A total of 16 network variables related to demographic and psychological characteristics were included. First, Gaussian Graphical Models (GGMs) were used for network estimation in 261 autistic adults and 384 non-autistic comparisons aged 30-85?years. Second, we repeated this step within two previously identified autism subgroups (N1 = 124, N2 = 130). Third, sex differences were explored in the networks of the autism subgroups. The networks of the autism and comparison groups differed on individual edges and visual inspection, although the Network Comparison Test (NCT) showed no overall differences. The networks of autism subgroups were similar based on visual inspection and statistical comparisons. Sex did not impact the subgroup networks differently. Networks were more similar than different, but observed edge differences could be informative for targeted support. Focusing on mean differences is not sufficient to determine which factors (and associations) are important for autistic people. Thus, network analysis provides a valuable tool beyond assessing mean differences for autistic adults. Lay Abstract There are large differences in the level of demographic, psychological, and lifestyle characteristics between autistic and non-autistic adults but also among autistic people. Our goal was to test whether these differences correspond to differences in underlying relationships between these characteristics-also referred to as network structure-to determine which characteristics (and relationships between them) are important. We tested differences in network structure in (1) autistic and non-autistic adults and (2) two previously identified subgroups of autistic adults. We showed that comparing networks of autistic and non-autistic adults provides subtle differences, whereas networks of the autism subgroups were similar. There were also no sex differences in the networks of the autism subgroups. Thus, the previously observed differences in the level of characteristics did not correspond to differences across subgroups in how these characteristics relate to one another (i.e. network structure). Consequently, a focus on differences in characteristics is not sufficient to determine which characteristics (and relationships between them) are of importance. Hence, network analysis provides a valuable tool beyond looking at (sub)group level differences. These results could provide hints for clinical practice, to eventually determine whether psychological distress, cognitive failures, and reduced quality of life in autistic adults can be addressed by tailored support. However, it is important that these results are first replicated before we move toward intervention or support. En ligne : https://dx.doi.org/10.1177/13623613231198544 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

Mental health counseling is rated as most helpful by autistic adults: Service perspectives in adulthood / Dara V. CHAN in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1190-1202 Titre : Mental health counseling is rated as most helpful by autistic adults: Service perspectives in adulthood Type de document : Texte imprimé et/ou numérique Auteurs : Dara V. CHAN, Auteur ; Julie D. DORAN, Auteur Article en page(s) : p.1190-1202 Langues : Anglais (eng) Mots-clés : adults  autism  community participation  employment  mental health  psychiatric treatment  service use Index. décimale : PER Périodiques Résumé : The growing number of autistic adults challenges the limited adult service system. While data on service use and barriers are available, there is limited information from the individual?s perspective on which services are most helpful in adulthood and how service use is connected to community participation outcomes. Forty autistic adults participated in a study combining global positioning system community participation measures with survey and interview data on service use, including which services are most helpful in adulthood, barriers to services, and service needs. Participation outcomes were analyzed relative to demographics, number and types of services received in the past 2?years, and current mental health service use. Participants received an average of two services in the past 2?years, most frequently mental health and employment services. Individuals currently seeing a mental health counselor were more likely to be working full-time and visit more community locations compared to those who were not seeing a counselor. Participants reported mental health services as the most helpful service received in adulthood followed by employment services. While an emphasis is often placed on employment services in the transition to adulthood, findings suggest a need for integrated mental health and employment services for autistic adults. Lay Abstract The number of autistic adults is growing, but there are fewer services to support them in adulthood. Many autistic adults need some support services to lead successful adult lives. We know a lot about the services autistic adults use and some of the problems with using these services, but we do not know which services are most helpful to them and how the services they use relate to how they interact with their communities. Forty autistic adults took part in a study about service use and community participation. They completed surveys, interviews, and carried a global positioning system tracker. They answered questions about which services are most helpful in adulthood, things that make it hard to use services, and what services they needed. Most participants used two services in the past 2?years, most frequently mental health and employment services. Adults who were currently seeing a mental health counselor were more likely to be working full-time and visit more locations in the community compared to those who were not seeing a counselor. Mental health services were reported as the most helpful service they received as adults, followed by employment services. We often focus on the importance of employment services after high school, but our findings show a need for both mental health and employment services for autistic adults. En ligne : https://dx.doi.org/10.1177/13623613231197446 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] Mental health counseling is rated as most helpful by autistic adults: Service perspectives in adulthood [Texte imprimé et/ou numérique] / Dara V. CHAN, Auteur ; Julie D. DORAN, Auteur . - p.1190-1202. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1190-1202 Mots-clés : adults  autism  community participation  employment  mental health  psychiatric treatment  service use Index. décimale : PER Périodiques Résumé : The growing number of autistic adults challenges the limited adult service system. While data on service use and barriers are available, there is limited information from the individual?s perspective on which services are most helpful in adulthood and how service use is connected to community participation outcomes. Forty autistic adults participated in a study combining global positioning system community participation measures with survey and interview data on service use, including which services are most helpful in adulthood, barriers to services, and service needs. Participation outcomes were analyzed relative to demographics, number and types of services received in the past 2?years, and current mental health service use. Participants received an average of two services in the past 2?years, most frequently mental health and employment services. Individuals currently seeing a mental health counselor were more likely to be working full-time and visit more community locations compared to those who were not seeing a counselor. Participants reported mental health services as the most helpful service received in adulthood followed by employment services. While an emphasis is often placed on employment services in the transition to adulthood, findings suggest a need for integrated mental health and employment services for autistic adults. Lay Abstract The number of autistic adults is growing, but there are fewer services to support them in adulthood. Many autistic adults need some support services to lead successful adult lives. We know a lot about the services autistic adults use and some of the problems with using these services, but we do not know which services are most helpful to them and how the services they use relate to how they interact with their communities. Forty autistic adults took part in a study about service use and community participation. They completed surveys, interviews, and carried a global positioning system tracker. They answered questions about which services are most helpful in adulthood, things that make it hard to use services, and what services they needed. Most participants used two services in the past 2?years, most frequently mental health and employment services. Adults who were currently seeing a mental health counselor were more likely to be working full-time and visit more locations in the community compared to those who were not seeing a counselor. Mental health services were reported as the most helpful service they received as adults, followed by employment services. We often focus on the importance of employment services after high school, but our findings show a need for both mental health and employment services for autistic adults. En ligne : https://dx.doi.org/10.1177/13623613231197446 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

Predicting the financial wellbeing of autistic adults: Part I / Ru Ying CAI in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1203-1215 Titre : Predicting the financial wellbeing of autistic adults: Part I Type de document : Texte imprimé et/ou numérique Auteurs : Ru Ying CAI, Auteur ; Gabrielle HALL, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.1203-1215 Langues : Anglais (eng) Mots-clés : employment  financial wellbeing  income  mental health  quality of life Index. décimale : PER Périodiques Résumé : Many autistic adults are likely to experience poor financial wellbeing and hardship due to unemployment and under-employment. Research in the general population demonstrates that subjective financial wellbeing-how people perceive their financial situation-influences quality of life. There is no research, however, examining the subjective financial wellbeing of autistic people. This study therefore aimed to (1) understand the subjective financial wellbeing of a sample of autistic adults living in Australia compared to a general Australian population sample and (2) identify the predictors of subjective financial wellbeing in this sample of autistic adults. To this end, 191 autistic adults aged 18-83?years (mean = 39.28, standard deviation = 11.74) completed an online survey about their economic status, financial wellbeing, financial behaviors, confidence in money management skills, and anxiety and depression symptoms. Almost half of our sample felt it was a struggle to make ends meet, whereas only one-third of the general Australian population felt this way. Similar to the general population, autistic people?s income and their financial behaviors (specifically, saving and not borrowing for everyday expenses) predicted their sense of financial wellbeing. Our findings have implications for both research and practice. Lay abstract Researchers have found the way people feel about their financial situation is related to their quality of life. We know that many autistic people find it hard to find a job. And for those autistic people who have a job, they are often underpaid. Not having a job or being underpaid often means having low income. Having low income is likely to influence how autistic people feel about their financial situation. However, no research has looked at these issues for autistic people. This is the first study that helps us learn more about what autistic adults think about their financial situation. We looked at autistic people?s thoughts on this issue compared to people from the general Australian population. We also looked at what things might impact how autistic people feel about their financial situation-which might be how much money they earn, what they do with that money, and their mental health. Many autistic adults felt they were struggling with financial wellbeing and this was connected both to the level of their income and how they said they managed their money. Those who were able to save and not borrow for everyday expenses reported feeling a greater sense of financial wellbeing. Concrete changes might help to improve autistic people?s financial wellbeing. We need to investigate how we can help autistic people find and keep well-paying jobs. And we need to work out the best ways of equipping autistic people with the skills they need in financial matters. En ligne : https://dx.doi.org/10.1177/13623613231196085 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] Predicting the financial wellbeing of autistic adults: Part I [Texte imprimé et/ou numérique] / Ru Ying CAI, Auteur ; Gabrielle HALL, Auteur ; Elizabeth PELLICANO, Auteur . - p.1203-1215. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1203-1215 Mots-clés : employment  financial wellbeing  income  mental health  quality of life Index. décimale : PER Périodiques Résumé : Many autistic adults are likely to experience poor financial wellbeing and hardship due to unemployment and under-employment. Research in the general population demonstrates that subjective financial wellbeing-how people perceive their financial situation-influences quality of life. There is no research, however, examining the subjective financial wellbeing of autistic people. This study therefore aimed to (1) understand the subjective financial wellbeing of a sample of autistic adults living in Australia compared to a general Australian population sample and (2) identify the predictors of subjective financial wellbeing in this sample of autistic adults. To this end, 191 autistic adults aged 18-83?years (mean = 39.28, standard deviation = 11.74) completed an online survey about their economic status, financial wellbeing, financial behaviors, confidence in money management skills, and anxiety and depression symptoms. Almost half of our sample felt it was a struggle to make ends meet, whereas only one-third of the general Australian population felt this way. Similar to the general population, autistic people?s income and their financial behaviors (specifically, saving and not borrowing for everyday expenses) predicted their sense of financial wellbeing. Our findings have implications for both research and practice. Lay abstract Researchers have found the way people feel about their financial situation is related to their quality of life. We know that many autistic people find it hard to find a job. And for those autistic people who have a job, they are often underpaid. Not having a job or being underpaid often means having low income. Having low income is likely to influence how autistic people feel about their financial situation. However, no research has looked at these issues for autistic people. This is the first study that helps us learn more about what autistic adults think about their financial situation. We looked at autistic people?s thoughts on this issue compared to people from the general Australian population. We also looked at what things might impact how autistic people feel about their financial situation-which might be how much money they earn, what they do with that money, and their mental health. Many autistic adults felt they were struggling with financial wellbeing and this was connected both to the level of their income and how they said they managed their money. Those who were able to save and not borrow for everyday expenses reported feeling a greater sense of financial wellbeing. Concrete changes might help to improve autistic people?s financial wellbeing. We need to investigate how we can help autistic people find and keep well-paying jobs. And we need to work out the best ways of equipping autistic people with the skills they need in financial matters. En ligne : https://dx.doi.org/10.1177/13623613231196085 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

Changes in the severity of autism symptom domains are related to mental health challenges during middle childhood / Einat WAIZBARD-BARTOV in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1216-1230 Titre : Changes in the severity of autism symptom domains are related to mental health challenges during middle childhood Type de document : Texte imprimé et/ou numérique Auteurs : Einat WAIZBARD-BARTOV, Auteur ; Emilio FERRER, Auteur ; Brianna HEATH, Auteur ; Derek S. ANDREWS, Auteur ; Sally ROGERS, Auteur ; Connor M. KERNS, Auteur ; Christine WU NORDAHL, Auteur ; Marjorie SOLOMON, Auteur ; David G. AMARAL, Auteur Article en page(s) : p.1216-1230 Langues : Anglais (eng) Mots-clés : anxiety  attention-deficit hyperactivity disorder  autism spectrum disorders  behavioral measurement  development  psychiatric comorbidity  repetitive behaviors and interests  school-age children  social cognition and social behavior Index. décimale : PER Périodiques Résumé : Many autistic children experience changes in core symptom severity across middle childhood, when co-occurring mental health conditions emerge. We evaluated this relationship in 75 autistic children from 6 to 11?years old. Autism symptom severity change was evaluated for total autism symptoms using the autism diagnostic observation schedule calibrated severity score, as well as social-communication symptoms calibrated severity score, and restricted/repetitive behaviors calibrated severity score. Children were grouped based on their symptom severity change patterns. Mental health symptoms (attention-deficit hyperactivity disorder, anxiety, disruptive behavior problems) were assessed via parental interview and questionnaire and compared across the groups. Co-occurring mental health symptoms were more strongly associated with change in social-communication symptom or restricted/repetitive behavior severity than with total autism symptom severity. Two relevant groups were identified. The social-communication symptom-increasing-severity-group (21.3%) had elevated and increasing levels of anxiety, attention-deficit hyperactivity disorder, and disruptive behavior problems compared with children with stable social-communication symptom severity. The restricted/repetitive behavior-decreasing-severity-group (22.7%) had elevated and increasing levels of anxiety; 94% of these children met criteria for an anxiety disorder. Autism symptom severity change during middle childhood is associated with co-occurring mental health symptoms. Children that increase in social-communication symptom severity are also likely to demonstrate greater psychopathology, while decreases in restricted/repetitive behavior severity are associated with higher levels of anxiety. Lay abstract For many autistic children, the severity of their autism symptoms changes during middle childhood. We studied whether these changes are associated with the emergence of other mental health challenges such as anxiety and attention-deficit hyperactivity disorder. Children who had increased social-communication challenges had more anxiety and attention-deficit hyperactivity disorder symptoms and disruptive behavior problems than other children. Children who decreased their restricted and repetitive behaviors, on the contrary, had more anxiety. We discuss why these changes in autism symptoms may lead to increases in other mental health concerns. En ligne : https://dx.doi.org/10.1177/13623613231195108 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] Changes in the severity of autism symptom domains are related to mental health challenges during middle childhood [Texte imprimé et/ou numérique] / Einat WAIZBARD-BARTOV, Auteur ; Emilio FERRER, Auteur ; Brianna HEATH, Auteur ; Derek S. ANDREWS, Auteur ; Sally ROGERS, Auteur ; Connor M. KERNS, Auteur ; Christine WU NORDAHL, Auteur ; Marjorie SOLOMON, Auteur ; David G. AMARAL, Auteur . - p.1216-1230. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1216-1230 Mots-clés : anxiety  attention-deficit hyperactivity disorder  autism spectrum disorders  behavioral measurement  development  psychiatric comorbidity  repetitive behaviors and interests  school-age children  social cognition and social behavior Index. décimale : PER Périodiques Résumé : Many autistic children experience changes in core symptom severity across middle childhood, when co-occurring mental health conditions emerge. We evaluated this relationship in 75 autistic children from 6 to 11?years old. Autism symptom severity change was evaluated for total autism symptoms using the autism diagnostic observation schedule calibrated severity score, as well as social-communication symptoms calibrated severity score, and restricted/repetitive behaviors calibrated severity score. Children were grouped based on their symptom severity change patterns. Mental health symptoms (attention-deficit hyperactivity disorder, anxiety, disruptive behavior problems) were assessed via parental interview and questionnaire and compared across the groups. Co-occurring mental health symptoms were more strongly associated with change in social-communication symptom or restricted/repetitive behavior severity than with total autism symptom severity. Two relevant groups were identified. The social-communication symptom-increasing-severity-group (21.3%) had elevated and increasing levels of anxiety, attention-deficit hyperactivity disorder, and disruptive behavior problems compared with children with stable social-communication symptom severity. The restricted/repetitive behavior-decreasing-severity-group (22.7%) had elevated and increasing levels of anxiety; 94% of these children met criteria for an anxiety disorder. Autism symptom severity change during middle childhood is associated with co-occurring mental health symptoms. Children that increase in social-communication symptom severity are also likely to demonstrate greater psychopathology, while decreases in restricted/repetitive behavior severity are associated with higher levels of anxiety. Lay abstract For many autistic children, the severity of their autism symptoms changes during middle childhood. We studied whether these changes are associated with the emergence of other mental health challenges such as anxiety and attention-deficit hyperactivity disorder. Children who had increased social-communication challenges had more anxiety and attention-deficit hyperactivity disorder symptoms and disruptive behavior problems than other children. Children who decreased their restricted and repetitive behaviors, on the contrary, had more anxiety. We discuss why these changes in autism symptoms may lead to increases in other mental health concerns. En ligne : https://dx.doi.org/10.1177/13623613231195108 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

'It wasn't the strategies on their own': Exploring caregivers' experiences of accessing services in the development of interventions for autistic people with intellectual disability / Jessica Hughes in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1231-1244 Titre : 'It wasn't the strategies on their own': Exploring caregivers' experiences of accessing services in the development of interventions for autistic people with intellectual disability Type de document : Texte imprimé et/ou numérique Auteurs : Jessica Hughes, Auteur ; Ruth ROBERTS, Auteur ; Joanne TARVER, Auteur ; Cheryl WARTERS-LOUTH, Auteur ; Betty ZHANG, Auteur ; Emma SOUTHWARD, Auteur ; Rachel SHAW, Auteur ; Georgina EDWARDS, Auteur ; Jane WAITE, Auteur ; Effie PEARSON, Auteur Année de publication : 2024 Article en page(s) : p.1231-1244 Langues : Anglais (eng) Mots-clés : access to services  anxiety  autism  challenging behaviour  intellectual disability  intervention Index. décimale : PER Périodiques Résumé : Autistic individuals with intellectual disability are at greater risk of experiencing anxiety than their non-autistic peers without intellectual disability. Anxiety in this group may present as behaviour that challenges, often leading families to reach out to healthcare or support services. However, many families experience difficulties accessing services and, due to the lack of research into evidence-based anxiety interventions for people with intellectual disability, may not receive individualised support once in a service. This study explored caregivers' experiences of accessing services for autistic individuals with intellectual disability, and their considerations when developing new interventions for this population. Interviews and focus groups were completed with 16 caregivers of autistic people with intellectual disability. Reflexive thematic analysis was used to develop five themes about service access experiences, and three themes about caregiver considerations for anxiety interventions. Caregivers reported that their experiences of accessing services did not meet their expectations, and considerations for future anxiety interventions were often reflective of this. Interventions being flexible to family circumstances to aid accessibility, the embedding of peer support in services, and skills that can be generalised across the lifespan could be applied when aiming to improve outcomes and develop interventions for this under-served population. Lay Abstract Many autistic individuals with intellectual disability experience anxiety, and for those who use few or no words, anxiety may present as behaviour that challenges, such as self-injury and avoiding anxiety-provoking situations. Families report difficulty accessing support from services for autistic individuals experiencing anxiety. Moreover, once receiving support, effective interventions for autistic people with intellectual disability are limited. We completed individual and group discussions with 16 caregivers of autistic people with intellectual disability, to (a) explore their experiences of accessing services for anxiety and/or behaviour that challenges for their child; and (b) understand what matters to caregivers when developing interventions that have been designed for them and the autistic individual with intellectual disability that they support. Caregivers reported that services, in their experience, did not deliver the support that they expected, and that they often needed to 'fight' for support. Caregivers considered services and families working together, the inclusion of peer support, and families being offered interventions that are flexible to individual circumstances to be important. These considerations are valuable for clinicians and researchers developing interventions and aiming to improve outcomes for autistic people with intellectual disability and their families. En ligne : https://dx.doi.org/10.1177/13623613231196084 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] 'It wasn't the strategies on their own': Exploring caregivers' experiences of accessing services in the development of interventions for autistic people with intellectual disability [Texte imprimé et/ou numérique] / Jessica Hughes, Auteur ; Ruth ROBERTS, Auteur ; Joanne TARVER, Auteur ; Cheryl WARTERS-LOUTH, Auteur ; Betty ZHANG, Auteur ; Emma SOUTHWARD, Auteur ; Rachel SHAW, Auteur ; Georgina EDWARDS, Auteur ; Jane WAITE, Auteur ; Effie PEARSON, Auteur . - 2024 . - p.1231-1244. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1231-1244 Mots-clés : access to services  anxiety  autism  challenging behaviour  intellectual disability  intervention Index. décimale : PER Périodiques Résumé : Autistic individuals with intellectual disability are at greater risk of experiencing anxiety than their non-autistic peers without intellectual disability. Anxiety in this group may present as behaviour that challenges, often leading families to reach out to healthcare or support services. However, many families experience difficulties accessing services and, due to the lack of research into evidence-based anxiety interventions for people with intellectual disability, may not receive individualised support once in a service. This study explored caregivers' experiences of accessing services for autistic individuals with intellectual disability, and their considerations when developing new interventions for this population. Interviews and focus groups were completed with 16 caregivers of autistic people with intellectual disability. Reflexive thematic analysis was used to develop five themes about service access experiences, and three themes about caregiver considerations for anxiety interventions. Caregivers reported that their experiences of accessing services did not meet their expectations, and considerations for future anxiety interventions were often reflective of this. Interventions being flexible to family circumstances to aid accessibility, the embedding of peer support in services, and skills that can be generalised across the lifespan could be applied when aiming to improve outcomes and develop interventions for this under-served population. Lay Abstract Many autistic individuals with intellectual disability experience anxiety, and for those who use few or no words, anxiety may present as behaviour that challenges, such as self-injury and avoiding anxiety-provoking situations. Families report difficulty accessing support from services for autistic individuals experiencing anxiety. Moreover, once receiving support, effective interventions for autistic people with intellectual disability are limited. We completed individual and group discussions with 16 caregivers of autistic people with intellectual disability, to (a) explore their experiences of accessing services for anxiety and/or behaviour that challenges for their child; and (b) understand what matters to caregivers when developing interventions that have been designed for them and the autistic individual with intellectual disability that they support. Caregivers reported that services, in their experience, did not deliver the support that they expected, and that they often needed to 'fight' for support. Caregivers considered services and families working together, the inclusion of peer support, and families being offered interventions that are flexible to individual circumstances to be important. These considerations are valuable for clinicians and researchers developing interventions and aiming to improve outcomes for autistic people with intellectual disability and their families. En ligne : https://dx.doi.org/10.1177/13623613231196084 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

'Let me tell you, I see echolalia as being a part of my son?s identity': Exploring echolalia as an expression of neurodiversity from a parental perspective / Eli G. COHN in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1245-1257 Titre : 'Let me tell you, I see echolalia as being a part of my son?s identity': Exploring echolalia as an expression of neurodiversity from a parental perspective Type de document : Texte imprimé et/ou numérique Auteurs : Eli G. COHN, Auteur ; Matthew J. HARRISON, Auteur ; Keith R. MCVILLY, Auteur Article en page(s) : p.1245-1257 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  communication and language  echolalia  family functioning and support  neurodiversity  parents  phenomenology Index. décimale : PER Périodiques Résumé : Echolalia has been described as the repetition of words, phrases, songs or other more elaborate dialogues uttered by another person, which may be immediate or delayed (International Classification of Diseases, 11th Revision; Diagnostic and Statistical Manual of Mental Disorders, 5th ed.). Some classify echolalia as a communication impairment reflective of delay, while others consider it a restricted, repetitive pattern of behaviours, without meaningful communicative function. Little attention is given to the experiences of non-clinicians, such as parents or teachers who may hold valuable insights to further our understanding of this phenomenon. This study forms part of a larger programme of inquiry which interviewed parents (N = 133) about their experiences of their sons' and daughters' echolalia. Using hermeneutic phenomenological analysis in an abductive framework, we present a perspective of echolalia that has largely remained silent in literature: echolalia as an expression of neurodiversity. Participants push back against the status quo of intervention, reclaiming echolalia as being a part of their child?s identity. Participants want their children to not only enjoy their echolalia but to fully embrace it as being a part of their individual identity. We propose alternatives to a purely clinical perspective of echolalia; alternatives that may place the neurodiversity-affirmative perspectives of our participants in a co-existing tension with clinicians. Lay abstract Echolalia is a commonly found speech and language condition in autistic children. Children with echolalia repeat words and phrases they previously hear in place of proving a non-repetitive response. In research and when visiting speech and language services, one of the common goals is to modify these repetitions so that these children may, more socially, engage with their surrounding environment. In our research, we identified that not all parents want their children?s echolalia to be modified. Some parents want their child to be able to enjoy echolalia and others don?t want anyone to intervene because they see it as something that makes their child unique and being unique is something to be celebrated. We believe that there might be a way for speech and language services who want to modify echolalia and the parents in our study who do not want their child?s echolalia to be modified, to be able to exist side-by-side. En ligne : https://dx.doi.org/10.1177/13623613231195795 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] 'Let me tell you, I see echolalia as being a part of my son?s identity': Exploring echolalia as an expression of neurodiversity from a parental perspective [Texte imprimé et/ou numérique] / Eli G. COHN, Auteur ; Matthew J. HARRISON, Auteur ; Keith R. MCVILLY, Auteur . - p.1245-1257. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1245-1257 Mots-clés : autism spectrum disorders  communication and language  echolalia  family functioning and support  neurodiversity  parents  phenomenology Index. décimale : PER Périodiques Résumé : Echolalia has been described as the repetition of words, phrases, songs or other more elaborate dialogues uttered by another person, which may be immediate or delayed (International Classification of Diseases, 11th Revision; Diagnostic and Statistical Manual of Mental Disorders, 5th ed.). Some classify echolalia as a communication impairment reflective of delay, while others consider it a restricted, repetitive pattern of behaviours, without meaningful communicative function. Little attention is given to the experiences of non-clinicians, such as parents or teachers who may hold valuable insights to further our understanding of this phenomenon. This study forms part of a larger programme of inquiry which interviewed parents (N = 133) about their experiences of their sons' and daughters' echolalia. Using hermeneutic phenomenological analysis in an abductive framework, we present a perspective of echolalia that has largely remained silent in literature: echolalia as an expression of neurodiversity. Participants push back against the status quo of intervention, reclaiming echolalia as being a part of their child?s identity. Participants want their children to not only enjoy their echolalia but to fully embrace it as being a part of their individual identity. We propose alternatives to a purely clinical perspective of echolalia; alternatives that may place the neurodiversity-affirmative perspectives of our participants in a co-existing tension with clinicians. Lay abstract Echolalia is a commonly found speech and language condition in autistic children. Children with echolalia repeat words and phrases they previously hear in place of proving a non-repetitive response. In research and when visiting speech and language services, one of the common goals is to modify these repetitions so that these children may, more socially, engage with their surrounding environment. In our research, we identified that not all parents want their children?s echolalia to be modified. Some parents want their child to be able to enjoy echolalia and others don?t want anyone to intervene because they see it as something that makes their child unique and being unique is something to be celebrated. We believe that there might be a way for speech and language services who want to modify echolalia and the parents in our study who do not want their child?s echolalia to be modified, to be able to exist side-by-side. En ligne : https://dx.doi.org/10.1177/13623613231195795 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

Social self-efficacy and mental well-being in autistic adults: Exploring the role of social identity / Lorna CAMUS in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1258-1267 Titre : Social self-efficacy and mental well-being in autistic adults: Exploring the role of social identity Type de document : Texte imprimé et/ou numérique Auteurs : Lorna CAMUS, Auteur ; Gnanathusharan RAJENDRAN, Auteur ; Mary Elizabeth STEWART, Auteur Article en page(s) : p.1258-1267 Langues : Anglais (eng) Mots-clés : adults  autism  double empathy  homophily  mental well-being  social identity  social self-efficacy Index. décimale : PER Périodiques Résumé : The double empathy problem proposes a lack of shared understanding between autistic and non-autistic people leads to interaction difficulties between them. Social self-efficacy (confidence in one?s social abilities) makes an important contribution to social interactions. Research has shown that autistic people show a social identity (one?s sense of self based on membership of social groups) with other autistic people, and this impacts positively on well-being. In addition, research shows that autistic people have a number of social identities. This study aims to understand whether social self-efficacy relates to mental well-being in autistic adults, and whether social identity plays a role in this relationship. A total of 512 autistic adults completed measures of social self-efficacy, social identity, mental well-being and autistic traits. In-group social self-efficacy was found to be higher than out-group social self-efficacy. Second, in-group social self-efficacy was positively associated with well-being. Finally, social identity did not mediate the relationships between social self-efficacy and mental well-being. These findings suggest social self-efficacy may relate to the nature of the group one interacts with. The findings support further research into the relationship between social self-efficacy and well-being, as well as using the double empathy problem as a framework for further investigations in other social groups. Lay abstract In the past, research has suggested that autistic people are not able to communicate well with non-autistic people because of autistic people?s communication difficulties. However, newer theories question this conclusion. It is now thought that the communication difficulties may be because autistic and non-autistic people both struggle to understand each other. This study explores how these differences in shared understanding relate to autistic people?s mental well-being, confidence in social situations and social identities (groups that we belong to and that influence how we see ourselves). We created an online survey taken by 512 autistic adults, which included questions about their confidence being social with people from different groups (such as other autistic people or people they share a hobby with), about the social groups they felt they belong to and about their mental well-being. First, participants reported higher social confidence when interacting with members of a social group they belonged to. Second, being confident during these interactions was linked to higher mental well-being. Finally, the groups participants belonged to did not influence the link between social confidence and mental well-being. These findings are important as they help us better understand autistic people?s experiences of social interactions and what contributes to good and poor mental well-being in autistic people. They also help us to think further about how to improve autistic people?s well-being. En ligne : https://dx.doi.org/10.1177/13623613231195799 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] Social self-efficacy and mental well-being in autistic adults: Exploring the role of social identity [Texte imprimé et/ou numérique] / Lorna CAMUS, Auteur ; Gnanathusharan RAJENDRAN, Auteur ; Mary Elizabeth STEWART, Auteur . - p.1258-1267. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1258-1267 Mots-clés : adults  autism  double empathy  homophily  mental well-being  social identity  social self-efficacy Index. décimale : PER Périodiques Résumé : The double empathy problem proposes a lack of shared understanding between autistic and non-autistic people leads to interaction difficulties between them. Social self-efficacy (confidence in one?s social abilities) makes an important contribution to social interactions. Research has shown that autistic people show a social identity (one?s sense of self based on membership of social groups) with other autistic people, and this impacts positively on well-being. In addition, research shows that autistic people have a number of social identities. This study aims to understand whether social self-efficacy relates to mental well-being in autistic adults, and whether social identity plays a role in this relationship. A total of 512 autistic adults completed measures of social self-efficacy, social identity, mental well-being and autistic traits. In-group social self-efficacy was found to be higher than out-group social self-efficacy. Second, in-group social self-efficacy was positively associated with well-being. Finally, social identity did not mediate the relationships between social self-efficacy and mental well-being. These findings suggest social self-efficacy may relate to the nature of the group one interacts with. The findings support further research into the relationship between social self-efficacy and well-being, as well as using the double empathy problem as a framework for further investigations in other social groups. Lay abstract In the past, research has suggested that autistic people are not able to communicate well with non-autistic people because of autistic people?s communication difficulties. However, newer theories question this conclusion. It is now thought that the communication difficulties may be because autistic and non-autistic people both struggle to understand each other. This study explores how these differences in shared understanding relate to autistic people?s mental well-being, confidence in social situations and social identities (groups that we belong to and that influence how we see ourselves). We created an online survey taken by 512 autistic adults, which included questions about their confidence being social with people from different groups (such as other autistic people or people they share a hobby with), about the social groups they felt they belong to and about their mental well-being. First, participants reported higher social confidence when interacting with members of a social group they belonged to. Second, being confident during these interactions was linked to higher mental well-being. Finally, the groups participants belonged to did not influence the link between social confidence and mental well-being. These findings are important as they help us better understand autistic people?s experiences of social interactions and what contributes to good and poor mental well-being in autistic people. They also help us to think further about how to improve autistic people?s well-being. En ligne : https://dx.doi.org/10.1177/13623613231195799 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

The impact of coping behaviors on perceived competence and social anxiety in the everyday social engagement of autistic adolescents / Yu-Wei Ryan CHEN in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1268-1279 Titre : The impact of coping behaviors on perceived competence and social anxiety in the everyday social engagement of autistic adolescents Type de document : Texte imprimé et/ou numérique Auteurs : Yu-Wei Ryan CHEN, Auteur ; Daphne Yih NG, Auteur ; Mei-Hui TSENG, Auteur ; Anita BUNDY, Auteur ; Reinie CORDIER, Auteur Article en page(s) : p.1268-1279 Langues : Anglais (eng) Mots-clés : autism  ecological momentary assessment  experience sampling method  real-life experience  social competence Index. décimale : PER Périodiques Résumé : Individuals who cope well with challenges may engage in social situations more successfully. We examined the association between coping behaviors, self-perceived competence, and social anxiety in everyday social situations. A total of 133 participants between the ages of 10 and 16?years (82 autistic, 51 neurotypical) carried a mobile device that prompted them seven times each day for 7?days to record what they were doing and their perceived competence and social anxiety in that situation. We used the Coping Inventory to measure overall coping abilities (i.e. coping with the self and the environment). Multilevel analyses found that autistic adolescents were more likely than neurotypical peers to experience social anxiety while engaged in maintenance or productive activities with adults. While their ability to cope with the self was positively associated with perceived social competence, it was negatively associated with the ability to cope with environmental challenges. Furthermore, autistic adolescents with poor ability to cope with environmental challenges were more likely than those who coped well to be socially anxious when engaged in leisure activities with peers. Findings from this study can guide evaluation and intervention to improve the social experiences of autistic adolescents by helping them increase coping skills. Lay abstract Individuals who cope well with challenges may engage in social situations more successfully. We examined how well autistic adolescents coped, depending on how competent they felt and how much anxiety they experienced during social activities. We included 133 individuals (82 autistic, 51 neurotypical) between the ages of 10 and 16?years. Participants carried a mobile device that prompted them seven times a day for 7?days to record what they were doing, how competent they felt and how much anxiety they experienced. We used the Coping Inventory to understand how well participants coped with environmental challenges and met their needs for growth. Autistic adolescents were more likely than neurotypical peers to feel anxious while doing activities with adults. Autistic adolescents who had more difficulty coping with challenges were more likely to feel anxious when doing leisure activities with peers. Interestingly, autistic adolescents who coped better with challenges tended to feel less competent in social situations. However, those better able to meet their needs for growth tended to perceive their social competence positively. These findings can help practitioners develop strategies and programs to reduce the negative social experiences of autistic adolescents by helping them cope better. En ligne : https://dx.doi.org/10.1177/13623613231196773 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] The impact of coping behaviors on perceived competence and social anxiety in the everyday social engagement of autistic adolescents [Texte imprimé et/ou numérique] / Yu-Wei Ryan CHEN, Auteur ; Daphne Yih NG, Auteur ; Mei-Hui TSENG, Auteur ; Anita BUNDY, Auteur ; Reinie CORDIER, Auteur . - p.1268-1279. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1268-1279 Mots-clés : autism  ecological momentary assessment  experience sampling method  real-life experience  social competence Index. décimale : PER Périodiques Résumé : Individuals who cope well with challenges may engage in social situations more successfully. We examined the association between coping behaviors, self-perceived competence, and social anxiety in everyday social situations. A total of 133 participants between the ages of 10 and 16?years (82 autistic, 51 neurotypical) carried a mobile device that prompted them seven times each day for 7?days to record what they were doing and their perceived competence and social anxiety in that situation. We used the Coping Inventory to measure overall coping abilities (i.e. coping with the self and the environment). Multilevel analyses found that autistic adolescents were more likely than neurotypical peers to experience social anxiety while engaged in maintenance or productive activities with adults. While their ability to cope with the self was positively associated with perceived social competence, it was negatively associated with the ability to cope with environmental challenges. Furthermore, autistic adolescents with poor ability to cope with environmental challenges were more likely than those who coped well to be socially anxious when engaged in leisure activities with peers. Findings from this study can guide evaluation and intervention to improve the social experiences of autistic adolescents by helping them increase coping skills. Lay abstract Individuals who cope well with challenges may engage in social situations more successfully. We examined how well autistic adolescents coped, depending on how competent they felt and how much anxiety they experienced during social activities. We included 133 individuals (82 autistic, 51 neurotypical) between the ages of 10 and 16?years. Participants carried a mobile device that prompted them seven times a day for 7?days to record what they were doing, how competent they felt and how much anxiety they experienced. We used the Coping Inventory to understand how well participants coped with environmental challenges and met their needs for growth. Autistic adolescents were more likely than neurotypical peers to feel anxious while doing activities with adults. Autistic adolescents who had more difficulty coping with challenges were more likely to feel anxious when doing leisure activities with peers. Interestingly, autistic adolescents who coped better with challenges tended to feel less competent in social situations. However, those better able to meet their needs for growth tended to perceive their social competence positively. These findings can help practitioners develop strategies and programs to reduce the negative social experiences of autistic adolescents by helping them cope better. En ligne : https://dx.doi.org/10.1177/13623613231196773 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

Mapping the link between socio-economic factors, autistic traits and mental health across different settings / Teresa DEL BIANCO in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1280-1296 Titre : Mapping the link between socio-economic factors, autistic traits and mental health across different settings Type de document : Texte imprimé et/ou numérique Auteurs : Teresa DEL BIANCO, Auteur ; Georgia LOCKWOOD ESTRIN, Auteur ; Julian TILLMANN, Auteur ; Bethany F. OAKLEY, Auteur ; Daisy CRAWLEY, Auteur ; Antonia SAN JOSE CACERES, Auteur ; Hannah HAYWARD, Auteur ; Mandy POTTER, Auteur ; Wendy MACKAY, Auteur ; Petrusa SMIT, Auteur ; Carlie DU PLESSIS, Auteur ; Lucy BRINK, Auteur ; Priscilla SPRINGER, Auteur ; Hein ODENDAAL, Auteur ; Tony CHARMAN, Auteur ; Tobias BANASCHEWSKI, Auteur ; Simon BARON-COHEN, Auteur ; Sven BÖLTE, Auteur ; Mark JOHNSON, Auteur ; Declan MURPHY, Auteur ; Jan BUITELAAR, Auteur ; Eva LOTH, Auteur ; Emily JH JONES, Auteur Article en page(s) : p.1280-1296 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  environmental factors Index. décimale : PER Périodiques Résumé : Autistic individuals experience higher rates of externalising and internalising symptoms that may vary with environmental factors. However, there is limited research on variation across settings that may highlight common factors with globally generalisable effects. Data were taken from two cohorts: a multinational European sample (n = 764; 453 autistic; 311 non-autistic; 6-30?years), and a South African sample (n = 100 non-autistic; 3-11?years). An exploratory factor analysis aggregated clinical (Verbal Comprehension and Perceptual Index), adaptive traits (Vineland Adaptive Behaviour Scale) and socio-economic variables (parental employment and education, home and family characteristics) in each cohort separately. With regression, we investigated the effect of these factors and autistic traits on internalising and externalising scores (measured with the Strengths and Difficulties Questionnaire). Cohorts showed similar four-factor structures (Person Characteristics, Family System, Parental and Material Resources). The 'Family System' factor captured family size and maternal factors and was associated with lower internalising and externalising symptoms in both cohorts. In the European cohort, high autistic traits reduced this effect; the opposite was found in the South Africa cohort. Our exploratory findings from two separate analyses represent consistent evidence that Family System is associated with internalising and externalising symptoms, with a context-specific impact in persons with high autism traits. Lay Abstract Autistic individuals are more likely than non-autistic individuals to experience a mental health condition in their lifetime, and this includes externalising and internalising symptoms. We know very little about how different environments and family conditions impact these symptoms for autistic individuals. Improving our understanding of these relationships is important so that we can identify individuals who may be in greater need of support. In this article, we seek to improve our understanding of how environmental and family conditions impact externalising and internalising symptoms in autistic and non-autistic people. To do this, we conducted analyses with two cohorts in very different settings - in Europe and South Africa - to ensure our findings are globally representative. We used advanced statistical methods to establish environmental and family conditions that were similar to each other, and which could be combined into specific 'factors'. We found that four similar 'factors' could be identified in the two cohorts. These were distinguished by personal characteristics and environmental conditions of individuals, and were named Person Characteristics, Family System, Parental and Material Resources. Interestingly, just 'Family System' was associated with internalising and externalising symptoms, and this was the same in both cohorts. We also found that having high traits of autism impacted this relationship between Family System and mental health conditions with opposite directions in the two settings. These results show that characteristics in the Family System are associated with internalising and externalising symptoms, and autistic persons are particularly impacted, reinforcing the notion that family stressors are important to consider when implementing policy and practice related to improving the mental health of autistic people. En ligne : https://dx.doi.org/10.1177/13623613231200297 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] Mapping the link between socio-economic factors, autistic traits and mental health across different settings [Texte imprimé et/ou numérique] / Teresa DEL BIANCO, Auteur ; Georgia LOCKWOOD ESTRIN, Auteur ; Julian TILLMANN, Auteur ; Bethany F. OAKLEY, Auteur ; Daisy CRAWLEY, Auteur ; Antonia SAN JOSE CACERES, Auteur ; Hannah HAYWARD, Auteur ; Mandy POTTER, Auteur ; Wendy MACKAY, Auteur ; Petrusa SMIT, Auteur ; Carlie DU PLESSIS, Auteur ; Lucy BRINK, Auteur ; Priscilla SPRINGER, Auteur ; Hein ODENDAAL, Auteur ; Tony CHARMAN, Auteur ; Tobias BANASCHEWSKI, Auteur ; Simon BARON-COHEN, Auteur ; Sven BÖLTE, Auteur ; Mark JOHNSON, Auteur ; Declan MURPHY, Auteur ; Jan BUITELAAR, Auteur ; Eva LOTH, Auteur ; Emily JH JONES, Auteur . - p.1280-1296. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1280-1296 Mots-clés : autism spectrum disorders  environmental factors Index. décimale : PER Périodiques Résumé : Autistic individuals experience higher rates of externalising and internalising symptoms that may vary with environmental factors. However, there is limited research on variation across settings that may highlight common factors with globally generalisable effects. Data were taken from two cohorts: a multinational European sample (n = 764; 453 autistic; 311 non-autistic; 6-30?years), and a South African sample (n = 100 non-autistic; 3-11?years). An exploratory factor analysis aggregated clinical (Verbal Comprehension and Perceptual Index), adaptive traits (Vineland Adaptive Behaviour Scale) and socio-economic variables (parental employment and education, home and family characteristics) in each cohort separately. With regression, we investigated the effect of these factors and autistic traits on internalising and externalising scores (measured with the Strengths and Difficulties Questionnaire). Cohorts showed similar four-factor structures (Person Characteristics, Family System, Parental and Material Resources). The 'Family System' factor captured family size and maternal factors and was associated with lower internalising and externalising symptoms in both cohorts. In the European cohort, high autistic traits reduced this effect; the opposite was found in the South Africa cohort. Our exploratory findings from two separate analyses represent consistent evidence that Family System is associated with internalising and externalising symptoms, with a context-specific impact in persons with high autism traits. Lay Abstract Autistic individuals are more likely than non-autistic individuals to experience a mental health condition in their lifetime, and this includes externalising and internalising symptoms. We know very little about how different environments and family conditions impact these symptoms for autistic individuals. Improving our understanding of these relationships is important so that we can identify individuals who may be in greater need of support. In this article, we seek to improve our understanding of how environmental and family conditions impact externalising and internalising symptoms in autistic and non-autistic people. To do this, we conducted analyses with two cohorts in very different settings - in Europe and South Africa - to ensure our findings are globally representative. We used advanced statistical methods to establish environmental and family conditions that were similar to each other, and which could be combined into specific 'factors'. We found that four similar 'factors' could be identified in the two cohorts. These were distinguished by personal characteristics and environmental conditions of individuals, and were named Person Characteristics, Family System, Parental and Material Resources. Interestingly, just 'Family System' was associated with internalising and externalising symptoms, and this was the same in both cohorts. We also found that having high traits of autism impacted this relationship between Family System and mental health conditions with opposite directions in the two settings. These results show that characteristics in the Family System are associated with internalising and externalising symptoms, and autistic persons are particularly impacted, reinforcing the notion that family stressors are important to consider when implementing policy and practice related to improving the mental health of autistic people. En ligne : https://dx.doi.org/10.1177/13623613231200297 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

Turkish Validation of the Rapid Interactive Screening Test for Autism in Toddlers / Muhammed Tayyib KADAK in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1297-1304 Titre : Turkish Validation of the Rapid Interactive Screening Test for Autism in Toddlers Type de document : Texte imprimé et/ou numérique Auteurs : Muhammed Tayyib KADAK, Auteur ; Nihal SERDENGEÇTI, Auteur ; Meryem SEÇEN YAZ?C?, Auteur ; Tuncay SAND?KÇ?, Auteur ; Aybike AYD?N, Auteur ; Zehra KOYUNCU, Auteur ; Yavuz MERAL, Auteur ; Abas HA?IMO?LU, Auteur ; Yasin ÇAL??KAN, Auteur ; Gizem BAYRAKTAR, Auteur ; Elif Can ÖZTÜRK, Auteur ; Mehmet Enes GÖKLER, Auteur ; Roula CHOUEIRI, Auteur ; Mahmut Cem TARAKÇ?O?LU, Auteur Article en page(s) : p.1297-1304 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  early identification  RITA-T  screening test  toddler Index. décimale : PER Périodiques Résumé : This study aims to investigate the validation of the Rapid Interactive Screening Test for Autism in Toddlers (RITA-T) in Turkish toddlers between 18 and 36 months of age. Children aged 18-36?months were referred to the department of child psychiatry for concerns of autism spectrum disorder, language disorder, developmental delay, and typically developing children were enrolled. A total of 81 toddlers participating in the study received clinical interviews according to the Diagnostic and Statistical Manual of Mental Disorders (5th ed.) and the Childhood Autism Rating Scale. They received the translated RIT-T from reliably trained and blinded providers. Parents completed the Modified Checklist for Autism in Toddlers form. A cut-off score was calculated based on the sensitivity, specificity, positive, and negative predictive values of the RITA-T total score that best differentiates autism spectrum disorder diagnosis. For all participants, the RITA-T total score correlated with the Modified Checklist for Autism in Toddlers (r = 0.715) and the Childhood Autism Rating Scale total score (r = 0.825). Using a cut-off score of ?17, the RITA-T had a sensitivity of .90 and a specificity of .927 for identifying autism spectrum disorder risk. The area under the curve was .977. Our findings demonstrate that the RITA-T is effective in Turkish toddlers for the early identification of autism spectrum disorder, early intervention settings, and allowing access to treatment. Lay abstract It is important to diagnose autism spectrum disorder at an early age and to start an early intervention program without delay. In this study, we aimed to validate the Rapid Interactive Screening Test for Autism in Toddlers (RITA-T) in a group of Turkish children and found that the RITA-T which has been shown to be a valid and reliable screening test for 18- to 36-month-old children in studies conducted in different countries, is also valid in Turkish children. Similar to previous studies, our results showed that the RITA-T has good sensitivity and specificity in distinguishing children with autism spectrum disorder. We think that our study will contribute to the timely initiation of early intervention programs for many children with autism by enabling a valid test to be used in screening programs. En ligne : https://dx.doi.org/10.1177/13623613231217801 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] Turkish Validation of the Rapid Interactive Screening Test for Autism in Toddlers [Texte imprimé et/ou numérique] / Muhammed Tayyib KADAK, Auteur ; Nihal SERDENGEÇTI, Auteur ; Meryem SEÇEN YAZ?C?, Auteur ; Tuncay SAND?KÇ?, Auteur ; Aybike AYD?N, Auteur ; Zehra KOYUNCU, Auteur ; Yavuz MERAL, Auteur ; Abas HA?IMO?LU, Auteur ; Yasin ÇAL??KAN, Auteur ; Gizem BAYRAKTAR, Auteur ; Elif Can ÖZTÜRK, Auteur ; Mehmet Enes GÖKLER, Auteur ; Roula CHOUEIRI, Auteur ; Mahmut Cem TARAKÇ?O?LU, Auteur . - p.1297-1304. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1297-1304 Mots-clés : autism spectrum disorder  early identification  RITA-T  screening test  toddler Index. décimale : PER Périodiques Résumé : This study aims to investigate the validation of the Rapid Interactive Screening Test for Autism in Toddlers (RITA-T) in Turkish toddlers between 18 and 36 months of age. Children aged 18-36?months were referred to the department of child psychiatry for concerns of autism spectrum disorder, language disorder, developmental delay, and typically developing children were enrolled. A total of 81 toddlers participating in the study received clinical interviews according to the Diagnostic and Statistical Manual of Mental Disorders (5th ed.) and the Childhood Autism Rating Scale. They received the translated RIT-T from reliably trained and blinded providers. Parents completed the Modified Checklist for Autism in Toddlers form. A cut-off score was calculated based on the sensitivity, specificity, positive, and negative predictive values of the RITA-T total score that best differentiates autism spectrum disorder diagnosis. For all participants, the RITA-T total score correlated with the Modified Checklist for Autism in Toddlers (r = 0.715) and the Childhood Autism Rating Scale total score (r = 0.825). Using a cut-off score of ?17, the RITA-T had a sensitivity of .90 and a specificity of .927 for identifying autism spectrum disorder risk. The area under the curve was .977. Our findings demonstrate that the RITA-T is effective in Turkish toddlers for the early identification of autism spectrum disorder, early intervention settings, and allowing access to treatment. Lay abstract It is important to diagnose autism spectrum disorder at an early age and to start an early intervention program without delay. In this study, we aimed to validate the Rapid Interactive Screening Test for Autism in Toddlers (RITA-T) in a group of Turkish children and found that the RITA-T which has been shown to be a valid and reliable screening test for 18- to 36-month-old children in studies conducted in different countries, is also valid in Turkish children. Similar to previous studies, our results showed that the RITA-T has good sensitivity and specificity in distinguishing children with autism spectrum disorder. We think that our study will contribute to the timely initiation of early intervention programs for many children with autism by enabling a valid test to be used in screening programs. En ligne : https://dx.doi.org/10.1177/13623613231217801 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

'I live in extremes': A qualitative investigation of Autistic adults' experiences of inertial rest and motion / Hannah RAPAPORT in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1305-1315 Titre : 'I live in extremes': A qualitative investigation of Autistic adults' experiences of inertial rest and motion Type de document : Texte imprimé et/ou numérique Auteurs : Hannah RAPAPORT, Auteur ; Hayley CLAPHAM, Auteur ; Jon ADAMS, Auteur ; Wenn LAWSON, Auteur ; Ka?ka PORAYSKA-POMSTA, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.1305-1315 Langues : Anglais (eng) Mots-clés : attention  flow  monotropism  quality of life  wellbeing Index. décimale : PER Périodiques Résumé : 'Autistic inertia' is part of the Autistic community?s everyday lexicon, yet the condition has received scant attention in the academic literature. The little attention it has received has focused on the disabling impact of 'inertial rest' (difficulty initiating tasks), with minimal exploration of the potential benefits of inertial motion (difficulty stopping tasks). Here, we sought to investigate Autistic people?s phenomenological experiences of inertial rest and motion and to identify factors that might moderate Autistic inertia. Autistic and non-Autistic researchers conducted semi-structured interviews with 24 Autistic adults. We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. Interviewees spoke in-depth of their inertial 'difficulties moving from one state to another' and described how these challenges pervade 'every single day'. While inertia was described as 'the single most disabling part of being Autistic', interviewees also described ways to respond to inertia, including taking pleasure in states of flow, whereby they could become completely absorbed in a task. While inertial difficulties are pervasive, our findings reveal the extreme nature of these task-switching difficulties for Autistic people. Our findings also contribute to a more holistic characterisation of inertia as both a disabling and enabling condition. Lay Abstract 'Autistic inertia' is a term used by Autistic people to refer to difficulties with starting and stopping tasks. However, there has not been much research on Autistic inertia. The research that is available on Autistic inertia has mostly focused on the negative aspects of inertia, rather than on the possible benefits of needing to continue tasks. In this research, we wanted to understand more about Autistic people?s experiences of inertia and to work out what things might influence these experiences. Autistic and non-Autistic researchers spoke in-depth to 24 Autistic adults. We identified four key ideas from people?s responses. Autistic people spoke about their inertial 'difficulties moving from one state to another' and described how these challenges affected them 'every single day'. While they experienced inertia as 'the single most disabling part of being Autistic', people also described the positive aspects of inertia, including the joy they felt when completely immersed in a task. Our Autistic participants emphasised that inertial difficulties are experienced by everyone, the intensity of these task-switching difficulties might be especially challenging for Autistic people. Our findings also reveal how Autistic inertia can be seen both as a disabling and as an enabling condition. En ligne : https://dx.doi.org/10.1177/13623613231198916 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] 'I live in extremes': A qualitative investigation of Autistic adults' experiences of inertial rest and motion [Texte imprimé et/ou numérique] / Hannah RAPAPORT, Auteur ; Hayley CLAPHAM, Auteur ; Jon ADAMS, Auteur ; Wenn LAWSON, Auteur ; Ka?ka PORAYSKA-POMSTA, Auteur ; Elizabeth PELLICANO, Auteur . - p.1305-1315. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1305-1315 Mots-clés : attention  flow  monotropism  quality of life  wellbeing Index. décimale : PER Périodiques Résumé : 'Autistic inertia' is part of the Autistic community?s everyday lexicon, yet the condition has received scant attention in the academic literature. The little attention it has received has focused on the disabling impact of 'inertial rest' (difficulty initiating tasks), with minimal exploration of the potential benefits of inertial motion (difficulty stopping tasks). Here, we sought to investigate Autistic people?s phenomenological experiences of inertial rest and motion and to identify factors that might moderate Autistic inertia. Autistic and non-Autistic researchers conducted semi-structured interviews with 24 Autistic adults. We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. Interviewees spoke in-depth of their inertial 'difficulties moving from one state to another' and described how these challenges pervade 'every single day'. While inertia was described as 'the single most disabling part of being Autistic', interviewees also described ways to respond to inertia, including taking pleasure in states of flow, whereby they could become completely absorbed in a task. While inertial difficulties are pervasive, our findings reveal the extreme nature of these task-switching difficulties for Autistic people. Our findings also contribute to a more holistic characterisation of inertia as both a disabling and enabling condition. Lay Abstract 'Autistic inertia' is a term used by Autistic people to refer to difficulties with starting and stopping tasks. However, there has not been much research on Autistic inertia. The research that is available on Autistic inertia has mostly focused on the negative aspects of inertia, rather than on the possible benefits of needing to continue tasks. In this research, we wanted to understand more about Autistic people?s experiences of inertia and to work out what things might influence these experiences. Autistic and non-Autistic researchers spoke in-depth to 24 Autistic adults. We identified four key ideas from people?s responses. Autistic people spoke about their inertial 'difficulties moving from one state to another' and described how these challenges affected them 'every single day'. While they experienced inertia as 'the single most disabling part of being Autistic', people also described the positive aspects of inertia, including the joy they felt when completely immersed in a task. Our Autistic participants emphasised that inertial difficulties are experienced by everyone, the intensity of these task-switching difficulties might be especially challenging for Autistic people. Our findings also reveal how Autistic inertia can be seen both as a disabling and as an enabling condition. En ligne : https://dx.doi.org/10.1177/13623613231198916 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

Short report: Transition to International Classification of Diseases, 10th Revision and the prevalence of autism in a cohort of healthcare systems / Musu M. SESAY in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1316-1321 Titre : Short report: Transition to International Classification of Diseases, 10th Revision and the prevalence of autism in a cohort of healthcare systems Type de document : Texte imprimé et/ou numérique Auteurs : Musu M. SESAY, Auteur ; Courtney E. MCCRACKEN, Auteur ; Christine STEWART, Auteur ; Gregory SIMON, Auteur ; Robert PENFOLD, Auteur ; Brian AHMEDANI, Auteur ; Rebecca C. ROSSOM, Auteur ; Christine Y. LU, Auteur ; Arne BECK, Auteur ; Karen J. COLEMAN, Auteur ; Yihe DAIDA, Auteur ; Frances L LYNCH, Auteur ; John ZEBER, Auteur ; Laurel COPELAND, Auteur ; Ashli OWEN-SMITH, Auteur Article en page(s) : p.1316-1321 Langues : Anglais (eng) Mots-clés : autism diagnosis  autism spectrum disorders  International Classification of Diseases  10th Revision Index. décimale : PER Périodiques Résumé : Currently, the prevalence of autism spectrum disorder (henceforth "autism") is 1 in 36, an increasing trend from previous estimates. In 2015, the United States adopted a new version (International Classification of Diseases, 10th Revision) of the World Health Organization coding system, a standard for classifying medical conditions. Our goal was to examine how the transition to this new coding system impacted autism diagnoses in 10 healthcare systems. We obtained information from electronic medical records and insurance claims data from July 2014 through December 2016 for each healthcare system. We used member enrollment data for 30 consecutive months to observe changes 15?months before and after adoption of the new coding system. Overall, the rates of autism per 1000 enrolled members was increasing for 0- to 5-year-olds before transition to International Classification of Diseases, 10th Revision and did not substantively change after the new coding was in place. There was variation observed in autism diagnoses before and after transition to International Classification of Diseases, 10th Revision for other age groups. The change to the new coding system did not meaningfully affect autism rates at the participating healthcare systems. The increase observed among 0- to 5-year-olds is likely indicative of an ongoing trend related to increases in screening for autism rather than a shift associated with the new coding. Lay abstract Currently, the prevalence of autism spectrum disorder (henceforth "autism") is 1 in 36, an increasing trend from previous estimates. In 2015, the United States adopted a new version (International Classification of Diseases, 10th Revision) of the World Health Organization coding system, a standard for classifying medical conditions. Our goal was to examine how the transition to this new coding system impacted autism diagnoses in 10 healthcare systems. We obtained information from electronic medical records and insurance claims data from July 2014 through December 2016 for each healthcare system. We used member enrollment data for 30 consecutive months to observe changes 15?months before and after adoption of the new coding system. Overall, the rates of autism per 1000 enrolled members was increasing for 0- to 5-year-olds before transition to International Classification of Diseases, 10th Revision and did not substantively change after the new coding was in place. There was variation observed in autism diagnoses before and after transition to International Classification of Diseases, 10th Revision for other age groups. The change to the new coding system did not meaningfully affect autism rates at the participating healthcare systems. The increase observed among 0- to 5-year-olds is likely indicative of an ongoing trend related to increases in screening for autism rather than a shift associated with the new coding. En ligne : https://dx.doi.org/10.1177/13623613231220687 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] Short report: Transition to International Classification of Diseases, 10th Revision and the prevalence of autism in a cohort of healthcare systems [Texte imprimé et/ou numérique] / Musu M. SESAY, Auteur ; Courtney E. MCCRACKEN, Auteur ; Christine STEWART, Auteur ; Gregory SIMON, Auteur ; Robert PENFOLD, Auteur ; Brian AHMEDANI, Auteur ; Rebecca C. ROSSOM, Auteur ; Christine Y. LU, Auteur ; Arne BECK, Auteur ; Karen J. COLEMAN, Auteur ; Yihe DAIDA, Auteur ; Frances L LYNCH, Auteur ; John ZEBER, Auteur ; Laurel COPELAND, Auteur ; Ashli OWEN-SMITH, Auteur . - p.1316-1321. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1316-1321 Mots-clés : autism diagnosis  autism spectrum disorders  International Classification of Diseases  10th Revision Index. décimale : PER Périodiques Résumé : Currently, the prevalence of autism spectrum disorder (henceforth "autism") is 1 in 36, an increasing trend from previous estimates. In 2015, the United States adopted a new version (International Classification of Diseases, 10th Revision) of the World Health Organization coding system, a standard for classifying medical conditions. Our goal was to examine how the transition to this new coding system impacted autism diagnoses in 10 healthcare systems. We obtained information from electronic medical records and insurance claims data from July 2014 through December 2016 for each healthcare system. We used member enrollment data for 30 consecutive months to observe changes 15?months before and after adoption of the new coding system. Overall, the rates of autism per 1000 enrolled members was increasing for 0- to 5-year-olds before transition to International Classification of Diseases, 10th Revision and did not substantively change after the new coding was in place. There was variation observed in autism diagnoses before and after transition to International Classification of Diseases, 10th Revision for other age groups. The change to the new coding system did not meaningfully affect autism rates at the participating healthcare systems. The increase observed among 0- to 5-year-olds is likely indicative of an ongoing trend related to increases in screening for autism rather than a shift associated with the new coding. Lay abstract Currently, the prevalence of autism spectrum disorder (henceforth "autism") is 1 in 36, an increasing trend from previous estimates. In 2015, the United States adopted a new version (International Classification of Diseases, 10th Revision) of the World Health Organization coding system, a standard for classifying medical conditions. Our goal was to examine how the transition to this new coding system impacted autism diagnoses in 10 healthcare systems. We obtained information from electronic medical records and insurance claims data from July 2014 through December 2016 for each healthcare system. We used member enrollment data for 30 consecutive months to observe changes 15?months before and after adoption of the new coding system. Overall, the rates of autism per 1000 enrolled members was increasing for 0- to 5-year-olds before transition to International Classification of Diseases, 10th Revision and did not substantively change after the new coding was in place. There was variation observed in autism diagnoses before and after transition to International Classification of Diseases, 10th Revision for other age groups. The change to the new coding system did not meaningfully affect autism rates at the participating healthcare systems. The increase observed among 0- to 5-year-olds is likely indicative of an ongoing trend related to increases in screening for autism rather than a shift associated with the new coding. En ligne : https://dx.doi.org/10.1177/13623613231220687 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527