Brief Report: Impact of COVID-19 on Individuals with ASD and Their Caregivers: A Perspective from the SPARK Cohort / L. Casey WHITE in Journal of Autism and Developmental Disorders, 51-10 (October 2021)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 51-10 (October 2021) . - p.3766-3773 Titre : Brief Report: Impact of COVID-19 on Individuals with ASD and Their Caregivers: A Perspective from the SPARK Cohort Type de document : texte imprimé Auteurs : L. Casey WHITE, Auteur ; J. Kiely LAW, Auteur ; Amy M. DANIELS, Auteur ; Jaimie TORONEY, Auteur ; Brianna VERNOIA, Auteur ; Sabrina XIAO, Auteur ; Pamela FELICIANO, Auteur ; Wendy K. CHUNG, Auteur Article en page(s) : p.3766-3773 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/therapy  Autistic Disorder  Covid-19  Caregivers  Child  Humans  SARS-CoV-2  United States  Autism spectrum disorder  Services  Stress  Telehealth Index. décimale : PER Périodiques Résumé : The impact of the 2019 coronavirus pandemic (COVID-19) in the United States is unprecedented, with unknown implications for the autism community. We surveyed 3502 parents/caregivers of individuals with an autism spectrum disorder (ASD) enrolled in Simons Powering Autism Research for Knowledge (SPARK) and found that most individuals with ASD experienced significant, ongoing disruptions to therapies. While some services were adapted to telehealth format, most participants were not receiving such services at follow-up, and those who were reported minimal benefit. Children under age five had the most severely disrupted services and lowest reported benefit of telehealth adaptation. Caregivers also reported worsening ASD symptoms and moderate family distress. Strategies to support the ASD community should be immediately developed and implemented. En ligne : http://dx.doi.org/10.1007/s10803-020-04816-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=453 [article] Brief Report: Impact of COVID-19 on Individuals with ASD and Their Caregivers: A Perspective from the SPARK Cohort [texte imprimé] / L. Casey WHITE, Auteur ; J. Kiely LAW, Auteur ; Amy M. DANIELS, Auteur ; Jaimie TORONEY, Auteur ; Brianna VERNOIA, Auteur ; Sabrina XIAO, Auteur ; Pamela FELICIANO, Auteur ; Wendy K. CHUNG, Auteur . - p.3766-3773. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 51-10 (October 2021) . - p.3766-3773 Mots-clés : Autism Spectrum Disorder/therapy  Autistic Disorder  Covid-19  Caregivers  Child  Humans  SARS-CoV-2  United States  Autism spectrum disorder  Services  Stress  Telehealth Index. décimale : PER Périodiques Résumé : The impact of the 2019 coronavirus pandemic (COVID-19) in the United States is unprecedented, with unknown implications for the autism community. We surveyed 3502 parents/caregivers of individuals with an autism spectrum disorder (ASD) enrolled in Simons Powering Autism Research for Knowledge (SPARK) and found that most individuals with ASD experienced significant, ongoing disruptions to therapies. While some services were adapted to telehealth format, most participants were not receiving such services at follow-up, and those who were reported minimal benefit. Children under age five had the most severely disrupted services and lowest reported benefit of telehealth adaptation. Caregivers also reported worsening ASD symptoms and moderate family distress. Strategies to support the ASD community should be immediately developed and implemented. En ligne : http://dx.doi.org/10.1007/s10803-020-04816-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=453

Early Pandemic Experiences of Autistic Adults: Predictors of Psychological Distress / Vanessa H. BAL in Autism Research, 14-6 (June 2021)  

Public ISBD [article]  inAutism Research > 14-6 (June 2021) . - p.1209-1219 Titre : Early Pandemic Experiences of Autistic Adults: Predictors of Psychological Distress Type de document : texte imprimé Auteurs : Vanessa H. BAL, Auteur ; Ellen WILKINSON, Auteur ; L. Casey WHITE, Auteur ; J. Kiely LAW, Auteur ; Pamela FELICIANO, Auteur ; Wendy K. CHUNG, Auteur Article en page(s) : p.1209-1219 Langues : Anglais (eng) Mots-clés : Adolescent  Adult  Autistic Disorder/psychology  COVID-19/epidemiology  Female  Health Surveys  Hope  Humans  Internet  Male  Pandemics  Psychological Distress  Risk Assessment  Stress, Psychological/psychology  Young Adult  COVID-19 pandemic  adults  co-morbid conditions  gender/female ASD  hope  loneliness  funding from Novartis, Roche, Pfizer, Biogen, Ipsen, LAM Therapeutics, Astellas,  Bridgebio and Quadrant Biosciences and has served on the Scientific Advisory Boards  for Sage Therapeutics, Roche, Celgene, Aeovian, Regenxbio and Takeda. Robin Kochel  has a contract with Yamo Pharmaceuticals, Inc., to consult on the design of clinical  trials for individuals with ASD. Suma Jacobs has been an investigator in multisite  treatment trials by Roche and served on an autism advisory board for Roche. Index. décimale : PER Périodiques Résumé : The COVID-19 pandemic has disrupted lives around the world. Autistic adults are at higher risk for co-occurring medical and psychiatric conditions and may be more prone to difficulties adapting to pandemic-related changes and social distancing mandates and coping with ongoing uncertainties. On the other hand, the pandemic may lead to greater understanding and acceptance of accommodations in the broader community that may facilitate supports for autistic adults beyond the pandemic. To learn more about their early pandemic experiences, online surveys were sent to independent adults enrolled in the Simons Powering Autism Research Knowledge (SPARK). The first survey was open from March 30 to April 19, 2020; a follow-up survey sent to original responders was open from May 27 to June 6, yielding 396 participants with data for both surveys. We found that adults who were female, younger, had prior diagnoses of a mental health condition, personal COVID-19 experience (i.e., knowing someone who had symptoms or tested positive) or less frequent hope for the future reported the greatest negative impacts. Decrease in feelings of hopefulness over time predicted greater psychological distress at T2, accounting for T1 impact and distress levels and increases in total COVID-19 impact. Less perceived benefit of online services also predicted later distress. Although there tends to be a focus on coping with negative effects of the pandemic, mental health providers may consider approaches that focus on positives, such as fostering hope and understanding factors that facilitate benefit from online services. LAY SUMMARY: Autistic adults may be at risk for psychological distress during the COVID-19 pandemic. The current study suggests that autistic adults who were younger, female, had a mental health diagnosis before the pandemic and knew someone who showed symptoms or tested positive for COVID-19 reported more areas negatively impacted by COVID-19 and greater difficulty coping with those effects. Decreases in hope over time were associated with greater psychological distress. Less perceived benefit from online services also predicted distress 2 months later. These results suggest important areas to further explore as we develop supports for autistic adults during the pandemic. En ligne : http://dx.doi.org/10.1002/aur.2480 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=449 [article] Early Pandemic Experiences of Autistic Adults: Predictors of Psychological Distress [texte imprimé] / Vanessa H. BAL, Auteur ; Ellen WILKINSON, Auteur ; L. Casey WHITE, Auteur ; J. Kiely LAW, Auteur ; Pamela FELICIANO, Auteur ; Wendy K. CHUNG, Auteur . - p.1209-1219. Langues : Anglais (eng) in Autism Research > 14-6 (June 2021) . - p.1209-1219 Mots-clés : Adolescent  Adult  Autistic Disorder/psychology  COVID-19/epidemiology  Female  Health Surveys  Hope  Humans  Internet  Male  Pandemics  Psychological Distress  Risk Assessment  Stress, Psychological/psychology  Young Adult  COVID-19 pandemic  adults  co-morbid conditions  gender/female ASD  hope  loneliness  funding from Novartis, Roche, Pfizer, Biogen, Ipsen, LAM Therapeutics, Astellas,  Bridgebio and Quadrant Biosciences and has served on the Scientific Advisory Boards  for Sage Therapeutics, Roche, Celgene, Aeovian, Regenxbio and Takeda. Robin Kochel  has a contract with Yamo Pharmaceuticals, Inc., to consult on the design of clinical  trials for individuals with ASD. Suma Jacobs has been an investigator in multisite  treatment trials by Roche and served on an autism advisory board for Roche. Index. décimale : PER Périodiques Résumé : The COVID-19 pandemic has disrupted lives around the world. Autistic adults are at higher risk for co-occurring medical and psychiatric conditions and may be more prone to difficulties adapting to pandemic-related changes and social distancing mandates and coping with ongoing uncertainties. On the other hand, the pandemic may lead to greater understanding and acceptance of accommodations in the broader community that may facilitate supports for autistic adults beyond the pandemic. To learn more about their early pandemic experiences, online surveys were sent to independent adults enrolled in the Simons Powering Autism Research Knowledge (SPARK). The first survey was open from March 30 to April 19, 2020; a follow-up survey sent to original responders was open from May 27 to June 6, yielding 396 participants with data for both surveys. We found that adults who were female, younger, had prior diagnoses of a mental health condition, personal COVID-19 experience (i.e., knowing someone who had symptoms or tested positive) or less frequent hope for the future reported the greatest negative impacts. Decrease in feelings of hopefulness over time predicted greater psychological distress at T2, accounting for T1 impact and distress levels and increases in total COVID-19 impact. Less perceived benefit of online services also predicted later distress. Although there tends to be a focus on coping with negative effects of the pandemic, mental health providers may consider approaches that focus on positives, such as fostering hope and understanding factors that facilitate benefit from online services. LAY SUMMARY: Autistic adults may be at risk for psychological distress during the COVID-19 pandemic. The current study suggests that autistic adults who were younger, female, had a mental health diagnosis before the pandemic and knew someone who showed symptoms or tested positive for COVID-19 reported more areas negatively impacted by COVID-19 and greater difficulty coping with those effects. Decreases in hope over time were associated with greater psychological distress. Less perceived benefit from online services also predicted distress 2 months later. These results suggest important areas to further explore as we develop supports for autistic adults during the pandemic. En ligne : http://dx.doi.org/10.1002/aur.2480 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=449

Impact of a Genetic Diagnosis for a Child?s Autism on Parental Perceptions / Anna KARLSEN ; Benjamin HUBER ; Alina LEVINE ; Amanie SALEM ; L. Casey WHITE ; Marti LUBY ; Ekaterina BEZBORODKO ; Sabrina XIAO ; Wendy K. CHUNG ; Robert L. KLITZMAN ; Paul S. APPELBAUM in Journal of Autism and Developmental Disorders, 55-5 (May 2025)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 55-5 (May 2025) . - p.1809-1823 Titre : Impact of a Genetic Diagnosis for a Child?s Autism on Parental Perceptions Type de document : texte imprimé Auteurs : Anna KARLSEN, Auteur ; Benjamin HUBER, Auteur ; Alina LEVINE, Auteur ; Amanie SALEM, Auteur ; L. Casey WHITE, Auteur ; Marti LUBY, Auteur ; Ekaterina BEZBORODKO, Auteur ; Sabrina XIAO, Auteur ; Wendy K. CHUNG, Auteur ; Robert L. KLITZMAN, Auteur ; Paul S. APPELBAUM, Auteur Article en page(s) : p.1809-1823 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Genetic testing is recommended as part of an autism assessment, and most parents support genetic testing for their minor children. However, the impact on parents of receiving a monogenetic/ copy number variant diagnosis for autism in their child is not well understood. To explore this, we surveyed and interviewed parents of children in the SPARK study, a study of autism that includes genetic testing. Surveys were administered one month before and one and 12 months after parents received their child?s genetic result. Interviews were conducted approximately one month after results disclosure. A genetic diagnosis (GD) for their child appeared to reduce parents' sense of self-blame and feelings of guilt, and this impact was relatively stable. The data also indicate a modest impact on parents' actions related to the condition, perceptions of themselves, and some aspects of life planning for their child, as measured by quantitative instruments at one month and 12 months after receipt of results. Other measures of parental identity and expectations for their child, in contrast, showed little change following receipt of genetic findings. Overall, parents who were told that no GD was identified showed minimal changes in their responses over time. These results suggest a discernable but relatively limited impact of genetic test results on parents of children with autism. These results should be reassuring to clinicians caring for children with autism and are consistent with studies in other areas of medicine that have suggested that genetic results tend to have fewer effects-negative or positive-than were anticipated. En ligne : https://doi.org/10.1007/s10803-024-06273-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554 [article] Impact of a Genetic Diagnosis for a Child?s Autism on Parental Perceptions [texte imprimé] / Anna KARLSEN, Auteur ; Benjamin HUBER, Auteur ; Alina LEVINE, Auteur ; Amanie SALEM, Auteur ; L. Casey WHITE, Auteur ; Marti LUBY, Auteur ; Ekaterina BEZBORODKO, Auteur ; Sabrina XIAO, Auteur ; Wendy K. CHUNG, Auteur ; Robert L. KLITZMAN, Auteur ; Paul S. APPELBAUM, Auteur . - p.1809-1823. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-5 (May 2025) . - p.1809-1823 Index. décimale : PER Périodiques Résumé : Genetic testing is recommended as part of an autism assessment, and most parents support genetic testing for their minor children. However, the impact on parents of receiving a monogenetic/ copy number variant diagnosis for autism in their child is not well understood. To explore this, we surveyed and interviewed parents of children in the SPARK study, a study of autism that includes genetic testing. Surveys were administered one month before and one and 12 months after parents received their child?s genetic result. Interviews were conducted approximately one month after results disclosure. A genetic diagnosis (GD) for their child appeared to reduce parents' sense of self-blame and feelings of guilt, and this impact was relatively stable. The data also indicate a modest impact on parents' actions related to the condition, perceptions of themselves, and some aspects of life planning for their child, as measured by quantitative instruments at one month and 12 months after receipt of results. Other measures of parental identity and expectations for their child, in contrast, showed little change following receipt of genetic findings. Overall, parents who were told that no GD was identified showed minimal changes in their responses over time. These results suggest a discernable but relatively limited impact of genetic test results on parents of children with autism. These results should be reassuring to clinicians caring for children with autism and are consistent with studies in other areas of medicine that have suggested that genetic results tend to have fewer effects-negative or positive-than were anticipated. En ligne : https://doi.org/10.1007/s10803-024-06273-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554

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