Brief Report: Impact of COVID-19 on Individuals with ASD and Their Caregivers: A Perspective from the SPARK Cohort / L. C. 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 et/ou numérique Auteurs : L. C. WHITE, Auteur ; J. K. LAW, Auteur ; Amy M. DANIELS, Auteur ; J. TORONEY, Auteur ; B. VERNOIA, Auteur ; S. XIAO, Auteur ; P. FELICIANO, Auteur ; W. 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 et/ou numérique] / L. C. WHITE, Auteur ; J. K. LAW, Auteur ; Amy M. DANIELS, Auteur ; J. TORONEY, Auteur ; B. VERNOIA, Auteur ; S. XIAO, Auteur ; P. FELICIANO, Auteur ; W. 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 et/ou numérique Auteurs : Vanessa H. BAL, Auteur ; E. WILKINSON, Auteur ; L. C. WHITE, Auteur ; J. K. LAW, Auteur ; P. FELICIANO, Auteur ; W. 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 et/ou numérique] / Vanessa H. BAL, Auteur ; E. WILKINSON, Auteur ; L. C. WHITE, Auteur ; J. K. LAW, Auteur ; P. FELICIANO, Auteur ; W. 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

Imputing cognitive impairment in SPARK, a large autism cohort / C. SHU in Autism Research, 15-1 (January 2022)  

Public ISBD [article]  inAutism Research > 15-1 (January 2022) . - p.156-170 Titre : Imputing cognitive impairment in SPARK, a large autism cohort Type de document : Texte imprimé et/ou numérique Auteurs : C. SHU, Auteur ; LeeAnne GREEN SNYDER, Auteur ; Y. SHEN, Auteur ; W. K. CHUNG, Auteur Article en page(s) : p.156-170 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder  Autistic Disorder  Child  Cognition  Cognitive Dysfunction/complications  Humans  Intelligence  autism  cognitive impairment  imputation  intelligence quotient  machine learning Index. décimale : PER Périodiques Résumé : Diverse large cohorts are necessary for dissecting subtypes of autism, and intellectual disability is one of the most robust endophenotypes for analysis. However, current cognitive assessment methods are not feasible at scale. We developed five commonly used machine learning models to predict cognitive impairment (FSIQ<80 and FSIQ<70) and FSIQ scores among 521 children with autism using parent-reported online surveys in SPARK, and evaluated them in an independent set (n = 1346) with a missing data rate up to 70%. We assessed accuracy, sensitivity, and specificity by comparing predicted cognitive levels against clinical IQ data. The elastic-net model has good performance (AUC = 0.876, sensitivity = 0.772, specificity = 0.803) using 129 predictive features to impute cognitive impairment (FSIQ<80). Top-ranked predictive features included parent-reported language and cognitive levels, age at autism diagnosis, and history of services. Prediction of FSIQ<70 and FSIQ scores also showed good performance. We show cognitive levels can be imputed with high accuracy for children with autism, using commonly collected parent-reported data and standardized surveys. The current model offers a method for large-scale autism studies seeking estimates of cognitive ability when standardized psychometric testing is not feasible. LAY SUMMARY: Children with autism who have more severe learning challenges or cognitive impairment have different needs that are important to consider in research studies. When children in our study were missing standardized cognitive testing scores, we were able to use machine learning with other information to correctly "guess" when they have cognitive impairment about 80% of the time. We can use this information in research in the future to develop more appropriate treatments for children with autism and cognitive impairment. En ligne : http://dx.doi.org/10.1002/aur.2622 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=450 [article] Imputing cognitive impairment in SPARK, a large autism cohort [Texte imprimé et/ou numérique] / C. SHU, Auteur ; LeeAnne GREEN SNYDER, Auteur ; Y. SHEN, Auteur ; W. K. CHUNG, Auteur . - p.156-170. Langues : Anglais (eng) in Autism Research > 15-1 (January 2022) . - p.156-170 Mots-clés : Autism Spectrum Disorder  Autistic Disorder  Child  Cognition  Cognitive Dysfunction/complications  Humans  Intelligence  autism  cognitive impairment  imputation  intelligence quotient  machine learning Index. décimale : PER Périodiques Résumé : Diverse large cohorts are necessary for dissecting subtypes of autism, and intellectual disability is one of the most robust endophenotypes for analysis. However, current cognitive assessment methods are not feasible at scale. We developed five commonly used machine learning models to predict cognitive impairment (FSIQ<80 and FSIQ<70) and FSIQ scores among 521 children with autism using parent-reported online surveys in SPARK, and evaluated them in an independent set (n = 1346) with a missing data rate up to 70%. We assessed accuracy, sensitivity, and specificity by comparing predicted cognitive levels against clinical IQ data. The elastic-net model has good performance (AUC = 0.876, sensitivity = 0.772, specificity = 0.803) using 129 predictive features to impute cognitive impairment (FSIQ<80). Top-ranked predictive features included parent-reported language and cognitive levels, age at autism diagnosis, and history of services. Prediction of FSIQ<70 and FSIQ scores also showed good performance. We show cognitive levels can be imputed with high accuracy for children with autism, using commonly collected parent-reported data and standardized surveys. The current model offers a method for large-scale autism studies seeking estimates of cognitive ability when standardized psychometric testing is not feasible. LAY SUMMARY: Children with autism who have more severe learning challenges or cognitive impairment have different needs that are important to consider in research studies. When children in our study were missing standardized cognitive testing scores, we were able to use machine learning with other information to correctly "guess" when they have cognitive impairment about 80% of the time. We can use this information in research in the future to develop more appropriate treatments for children with autism and cognitive impairment. En ligne : http://dx.doi.org/10.1002/aur.2622 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=450

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