Caichen Zhong, Juliette Rando, Marisa A. Patti, Joseph M. Braun, Aimin Chen, Yingying Xu, Bruce P. Lanphear, Kimberly Yolton, Lisa A. Croen, M. Daniele Fallin, Irva Hertz-Picciotto, Craig J. Newschaffer, Kristen Lyall
Thyroid hormones are essential for neurodevelopment. Few studies have considered associations with quantitatively measured autism spectrum disorder (ASD)-related traits, which may help elucidate associations for a broader population. Participants were drawn from two prospective pregnancy cohorts: the Early Autism Risk Longitudinal Investigation (EARLI), enrolling pregnant women who already had a child with ASD, and the Health Outcomes and Measures of the Environment (HOME) Study, following pregnant women from the greater Cincinnati, OH area. Gestational thyroid-stimulating hormone (TSH) and free thyroxine (FT4) were measured in mid-pregnancy 16 (±3) weeks gestation serum samples. ASD-related traits were measured using the Social Responsiveness Scale (SRS) at ages 3–8 years. The association was examined using quantile regression, adjusting for maternal and sociodemographic factors. 278 participants (132 from EARLI, 146 from HOME) were included. TSH distributions were similar across cohorts, while FT4 levels were higher in EARLI compared to HOME. In pooled analyses, particularly for those in the highest SRS quantile (95th percentile), higher FT4 levels were associated with increasing SRS scores (β = 5.21, 95% CI = 0.93, 9.48), and higher TSH levels were associated with decreasing SRS scores (β = −6.94, 95% CI = −11.04, −2.83). The association between TSH and SRS remained significant in HOME for the 95% percentile of SRS scores (β = −6.48, 95% CI = −12.16, −0.80), but not EARLI. Results for FT4 were attenuated when examined in the individual cohorts. Our results add to evidence that gestational thyroid hormones may be associated with ASD-related outcomes by suggesting that relationships may differ across the distribution of ASD-related traits and by familial likelihood of ASD.
{"title":"Gestational thyroid hormones and autism-related traits in the EARLI and HOME studies","authors":"Caichen Zhong, Juliette Rando, Marisa A. Patti, Joseph M. Braun, Aimin Chen, Yingying Xu, Bruce P. Lanphear, Kimberly Yolton, Lisa A. Croen, M. Daniele Fallin, Irva Hertz-Picciotto, Craig J. Newschaffer, Kristen Lyall","doi":"10.1002/aur.3115","DOIUrl":"10.1002/aur.3115","url":null,"abstract":"<p>Thyroid hormones are essential for neurodevelopment. Few studies have considered associations with quantitatively measured autism spectrum disorder (ASD)-related traits, which may help elucidate associations for a broader population. Participants were drawn from two prospective pregnancy cohorts: the Early Autism Risk Longitudinal Investigation (EARLI), enrolling pregnant women who already had a child with ASD, and the Health Outcomes and Measures of the Environment (HOME) Study, following pregnant women from the greater Cincinnati, OH area. Gestational thyroid-stimulating hormone (TSH) and free thyroxine (FT4) were measured in mid-pregnancy 16 (±3) weeks gestation serum samples. ASD-related traits were measured using the Social Responsiveness Scale (SRS) at ages 3–8 years. The association was examined using quantile regression, adjusting for maternal and sociodemographic factors. 278 participants (132 from EARLI, 146 from HOME) were included. TSH distributions were similar across cohorts, while FT4 levels were higher in EARLI compared to HOME. In pooled analyses, particularly for those in the highest SRS quantile (95th percentile), higher FT4 levels were associated with increasing SRS scores (<i>β</i> = 5.21, 95% CI = 0.93, 9.48), and higher TSH levels were associated with decreasing SRS scores (<i>β</i> = −6.94, 95% CI = −11.04, −2.83). The association between TSH and SRS remained significant in HOME for the 95% percentile of SRS scores (<i>β</i> = −6.48, 95% CI = −12.16, −0.80), but not EARLI. Results for FT4 were attenuated when examined in the individual cohorts. Our results add to evidence that gestational thyroid hormones may be associated with ASD-related outcomes by suggesting that relationships may differ across the distribution of ASD-related traits and by familial likelihood of ASD.</p>","PeriodicalId":131,"journal":{"name":"Autism Research","volume":null,"pages":null},"PeriodicalIF":4.7,"publicationDate":"2024-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140023556","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Predictive processing accounts of autism posit that autistic individuals' perception is less biased by expectations than nonautistic individuals', perhaps through stronger precision-weighting of prediction errors. Since precision-weighting is fundamental to all information processing, under this theory, the differences between autistic and nonautistic individuals should be domain-general and observable in both behavior and brain responses. This study used EEG, behavioral responses, and eye-tracking co-registration during gaze-direction adaptation, to investigate whether increased precision-weighting of prediction errors is evident through smaller adaptation after-effects in autistic adolescents compared with nonautistic peers. Multilevel modeling showed that autistic and nonautistic adolescents' responses were consistent with behavioral adaptation, with Bayesian statistics providing extremely strong evidence for the absence of a group difference. Cluster-based permutation testing of ERP responses did not show the expected adaptation after-effect but did show habituation to repeated stimulus presentation, and no group difference was detected, a result not consistent with the theoretical account. Combined with the few other available studies, the current findings raise challenges for the theory, suggesting no fundamental difference in precision-weighting of prediction errors in autism.
{"title":"Autistic and nonautistic adolescents do not differ in adaptation to gaze direction","authors":"Emma K. Ward, Jan K. Buitelaar, Sabine Hunnius","doi":"10.1002/aur.3118","DOIUrl":"10.1002/aur.3118","url":null,"abstract":"<p>Predictive processing accounts of autism posit that autistic individuals' perception is less biased by expectations than nonautistic individuals', perhaps through stronger precision-weighting of prediction errors. Since precision-weighting is fundamental to all information processing, under this theory, the differences between autistic and nonautistic individuals should be domain-general and observable in both behavior and brain responses. This study used EEG, behavioral responses, and eye-tracking co-registration during gaze-direction adaptation, to investigate whether increased precision-weighting of prediction errors is evident through smaller adaptation after-effects in autistic adolescents compared with nonautistic peers. Multilevel modeling showed that autistic and nonautistic adolescents' responses were consistent with behavioral adaptation, with Bayesian statistics providing extremely strong evidence for the absence of a group difference. Cluster-based permutation testing of ERP responses did not show the expected adaptation after-effect but did show habituation to repeated stimulus presentation, and no group difference was detected, a result not consistent with the theoretical account. Combined with the few other available studies, the current findings raise challenges for the theory, suggesting no fundamental difference in precision-weighting of prediction errors in autism.</p>","PeriodicalId":131,"journal":{"name":"Autism Research","volume":null,"pages":null},"PeriodicalIF":4.7,"publicationDate":"2024-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/aur.3118","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140023555","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Bernhard Suter, Davut Pehlivan, Muharrem Ak, Holly K. Harris, Ariel M. Lyons-Warren
The methyl CpG-binding protein-2 (MECP2) gene is located on the Xq28 region. Loss of function mutations or increased copies of MECP2 result in Rett syndrome (RTT) and MECP2 duplication syndrome (MDS), respectively. Individuals with both disorders exhibit overlapping autism symptoms, yet few studies have dissected the differences between these gene dosage sensitive disorders. Further, research examining sensory processing patterns in persons with RTT and MDS is largely absent. Thus, the goal of this study was to analyze and compare sensory processing patterns in persons with RTT and MDS. Towards this goal, caregivers of 50 female individuals with RTT and 122 male individuals with MDS, between 1 and 46 years of age, completed a standardized measure of sensory processing, the Sensory Experiences Questionnaire. Patterns detected in both disorders were compared against each other and against normative values. We found sensory processing abnormalities for both hyper- and hypo-sensitivity in both groups. Interestingly, abnormalities in MDS were more pronounced compared with in RTT, particularly with items concerning hypersensitivity and sensory seeking, but not hyposensitivity. Individuals with MDS also exhibited greater sensory symptoms compared with RTT in the areas of tactile and vestibular sensory processing and for both social and nonsocial stimuli. This study provides a first description of sensory symptoms in individuals with RTT and individuals with MDS. Similar to other neurodevelopmental disorders, a variety of sensory processing abnormalities was found. These findings reveal a first insight into sensory processing abnormalities caused by a dosage sensitive gene and may ultimately help guide therapeutic approaches for these disorders.
{"title":"Sensory experiences questionnaire unravels differences in sensory profiles between MECP2-related disorders","authors":"Bernhard Suter, Davut Pehlivan, Muharrem Ak, Holly K. Harris, Ariel M. Lyons-Warren","doi":"10.1002/aur.3112","DOIUrl":"10.1002/aur.3112","url":null,"abstract":"<p>The methyl CpG-binding protein-2 (<i>MECP2</i>) gene is located on the Xq28 region. Loss of function mutations or increased copies of <i>MECP2</i> result in Rett syndrome (RTT) and MECP2 duplication syndrome (MDS), respectively. Individuals with both disorders exhibit overlapping autism symptoms, yet few studies have dissected the differences between these gene dosage sensitive disorders. Further, research examining sensory processing patterns in persons with RTT and MDS is largely absent. Thus, the goal of this study was to analyze and compare sensory processing patterns in persons with RTT and MDS. Towards this goal, caregivers of 50 female individuals with RTT and 122 male individuals with MDS, between 1 and 46 years of age, completed a standardized measure of sensory processing, the Sensory Experiences Questionnaire. Patterns detected in both disorders were compared against each other and against normative values. We found sensory processing abnormalities for both hyper- and hypo-sensitivity in both groups. Interestingly, abnormalities in MDS were more pronounced compared with in RTT, particularly with items concerning hypersensitivity and sensory seeking, but not hyposensitivity. Individuals with MDS also exhibited greater sensory symptoms compared with RTT in the areas of tactile and vestibular sensory processing and for both social and nonsocial stimuli. This study provides a first description of sensory symptoms in individuals with RTT and individuals with MDS. Similar to other neurodevelopmental disorders, a variety of sensory processing abnormalities was found. These findings reveal a first insight into sensory processing abnormalities caused by a dosage sensitive gene and may ultimately help guide therapeutic approaches for these disorders.</p>","PeriodicalId":131,"journal":{"name":"Autism Research","volume":null,"pages":null},"PeriodicalIF":4.7,"publicationDate":"2024-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/aur.3112","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140023557","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Lindsay Shea, Dylan Cooper, Amy Blank Wilson, Jordan Hyatt, Dianah Msipa, Björn Hofvander, Svein Øverland, Wainesten Carmago da Silva, Melanie Mogavero, Derek Green, Nina Wall, Matthew Lerner, Aubyn Stahmer, Kathy Hooven, Juan Bornman, Khylil Robinson, John Burke
{"title":"A response to and caution of “Language is a critical mediator of autistic experiences within the criminal justice system”","authors":"Lindsay Shea, Dylan Cooper, Amy Blank Wilson, Jordan Hyatt, Dianah Msipa, Björn Hofvander, Svein Øverland, Wainesten Carmago da Silva, Melanie Mogavero, Derek Green, Nina Wall, Matthew Lerner, Aubyn Stahmer, Kathy Hooven, Juan Bornman, Khylil Robinson, John Burke","doi":"10.1002/aur.3111","DOIUrl":"10.1002/aur.3111","url":null,"abstract":"","PeriodicalId":131,"journal":{"name":"Autism Research","volume":null,"pages":null},"PeriodicalIF":4.7,"publicationDate":"2024-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140013820","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Anne V. Kirby, Caitlin M. Conner, Carla A. Mazefsky
Understanding suicide risk is critical for supporting prevention. A growing body of evidence shows autistic people are at greater risk for multiple suicide-related outcomes than non-autistic people. This commentary is in response to an observed pattern of miscommunication in scientific and community spaces about autistic females having higher risk of suicide. However, it is not always clear who they are being compared with in these statements. To address this confusion, we summarize the current population-based evidence on autistic suicide risk, highlighting findings related to sex similarities and differences, which actually indicates comparable rates of suicide death among autistic males and females, and mixed findings related to sex differences in risk of other suicidal behaviors. We call for greater clarity in suicide risk communication moving forward focused on outcomes, measurement, sampling methods, and comparison groups to reflect accurate conclusions about existing evidence. Further research is needed about the full range of suicide-related outcomes for autistic people, including a greater understanding of sex differences as well as potential gender differences to include transgender and nonbinary autistic people. However, studies of sex and gender differences should not overshadow the compelling need for efforts to understand and address the elevated risk of suicidal thoughts, behaviors, and death among autistic people across sex and gender boundaries.
{"title":"Are autistic females at greater risk of suicide? A call for clarity to advance suicide prevention for the whole community","authors":"Anne V. Kirby, Caitlin M. Conner, Carla A. Mazefsky","doi":"10.1002/aur.3120","DOIUrl":"10.1002/aur.3120","url":null,"abstract":"<p>Understanding suicide risk is critical for supporting prevention. A growing body of evidence shows autistic people are at greater risk for multiple suicide-related outcomes than non-autistic people. This commentary is in response to an observed pattern of miscommunication in scientific and community spaces about autistic females having higher risk of suicide. However, it is not always clear who they are being compared with in these statements. To address this confusion, we summarize the current population-based evidence on autistic suicide risk, highlighting findings related to sex similarities and differences, which actually indicates comparable rates of suicide death among autistic males and females, and mixed findings related to sex differences in risk of other suicidal behaviors. We call for greater clarity in suicide risk communication moving forward focused on outcomes, measurement, sampling methods, and comparison groups to reflect accurate conclusions about existing evidence. Further research is needed about the full range of suicide-related outcomes for autistic people, including a greater understanding of sex differences as well as potential gender differences to include transgender and nonbinary autistic people. However, studies of sex and gender differences should not overshadow the compelling need for efforts to understand and address the elevated risk of suicidal thoughts, behaviors, and death among autistic people across sex and gender boundaries.</p>","PeriodicalId":131,"journal":{"name":"Autism Research","volume":null,"pages":null},"PeriodicalIF":4.7,"publicationDate":"2024-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/aur.3120","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140013821","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hillary K. Schiltz, Zachary J. Williams, Shuting Zheng, Elizabeth A. Kaplan-Kahn, Hannah E. Morton, Kashia A. Rosenau, Christina Nicolaidis, Alexandra Sturm, Catherine Lord, Autism PROMnet
High quality science relies upon psychometrically valid and reliable measurement, yet very few Patient Reported Outcome Measures (PROMs) have been developed or thoroughly validated for use with autistic individuals. The present commentary summarizes the current state of autism PROM science, based on discussion at the Special Interest Group (SIG) at the 2022 International Society for Autism Research (INSAR) Annual Meeting and collective expertise of the authors. First, we identify current issues in autism PROM research including content and construct operationalization, informant-structure, measure accessibility, and measure validation and generalization. We then enumerate barriers to conducting and disseminating this research, such as a lack of guidance, concerns regarding funding and time, lack of accessible training and professionals with psychometric skills, difficulties collecting large representative samples, and challenges with dissemination. Lastly, we offer future priorities and resources to improve PROMs in autism research including a need to continue to evaluate and develop PROMs for autistic people using robust methods, to prioritize diverse and representative samples, to expand the breadth of psychometric properties and techniques, and to consider developing field specific guidelines. We remain extremely optimistic about the future directions of this area of autism research. This work is well positioned to have an immense, positive impact on our scientific understanding of autism and the everyday lives of autistic people and their families.
{"title":"Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs) in autism research","authors":"Hillary K. Schiltz, Zachary J. Williams, Shuting Zheng, Elizabeth A. Kaplan-Kahn, Hannah E. Morton, Kashia A. Rosenau, Christina Nicolaidis, Alexandra Sturm, Catherine Lord, Autism PROMnet","doi":"10.1002/aur.3114","DOIUrl":"10.1002/aur.3114","url":null,"abstract":"<p>High quality science relies upon psychometrically valid and reliable measurement, yet very few Patient Reported Outcome Measures (PROMs) have been developed or thoroughly validated for use with autistic individuals. The present commentary summarizes the current state of autism PROM science, based on discussion at the Special Interest Group (SIG) at the 2022 International Society for Autism Research (INSAR) Annual Meeting and collective expertise of the authors. First, we identify current issues in autism PROM research including content and construct operationalization, informant-structure, measure accessibility, and measure validation and generalization. We then enumerate barriers to conducting and disseminating this research, such as a lack of guidance, concerns regarding funding and time, lack of accessible training and professionals with psychometric skills, difficulties collecting large representative samples, and challenges with dissemination. Lastly, we offer future priorities and resources to improve PROMs in autism research including a need to continue to evaluate and develop PROMs for autistic people using robust methods, to prioritize diverse and representative samples, to expand the breadth of psychometric properties and techniques, and to consider developing field specific guidelines. We remain extremely optimistic about the future directions of this area of autism research. This work is well positioned to have an immense, positive impact on our scientific understanding of autism and the everyday lives of autistic people and their families.</p>","PeriodicalId":131,"journal":{"name":"Autism Research","volume":null,"pages":null},"PeriodicalIF":4.7,"publicationDate":"2024-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/aur.3114","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140013822","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Tulsi A. Radhoe, Joost A. Agelink van Rentergem, Carolien Torenvliet, Annabeth P. Groenman, Wikke J. van der Putten, Hilde M. Geurts
Autism in adulthood is characterized by heterogeneity, complicating the provision of tailored support. In previous work, we aimed to capture this heterogeneity by determining subgroups of autistic adults that differed in clinical outcomes: cognitive failures, psychological difficulties, and quality of life (QoL). Two subgroups were identified: a “Feelings of Low Grip” subgroup characterized by experiencing a lower sense of mastery and a higher susceptibility to difficulties in daily life, and a “Feelings of High Grip” subgroup characterized by a higher sense of mastery and lower susceptibility to difficulties in daily life. The current pre-registered study involves a longitudinal extension to determine (a) stability and (b) predictive value of the previously identified two subgroups. Subgroups were identified using community detection based on 14 self-report measures related to demographic, psychological, and lifestyle characteristics in two samples (aged 31–86 years) that were analyzed separately: Sample 1 (NAutism = 80) measured 5 years after baseline and Sample 2 (NAutism = 241, NComparison = 211) measured 2 years after baseline. The stability over time was assessed based on (a) the number of subgroups, (b) subgroup profiles, and (c) subgroup membership. Predictive validity was assessed for cognitive failures, psychological difficulties, and QoL. Results indicated that autistic and non-autistic adults formed distinct subgroups. Within both autism samples, the two previously identified autism subgroups were replicated at follow-up. Subgroup profiles were similar for >50% of the variables at two-year follow-up, and 21% at five-year follow-up. Moreover, ≥76% remained in the same subgroup at two-year follow-up, and ≥ 57% after 5 years. Subgroup membership was predictive of external clinical outcomes up to 5 years. Thus, this study demonstrated the stability and predictive value of the autism subgroups, especially for the two-year follow-up. A further focus on their clinical utility might increase the aptness of support, and may provide more insight into the aging process when being autistic.
{"title":"The clinical relevance of subgroups of autistic adults: Stability and predictive value","authors":"Tulsi A. Radhoe, Joost A. Agelink van Rentergem, Carolien Torenvliet, Annabeth P. Groenman, Wikke J. van der Putten, Hilde M. Geurts","doi":"10.1002/aur.3116","DOIUrl":"10.1002/aur.3116","url":null,"abstract":"<p>Autism in adulthood is characterized by heterogeneity, complicating the provision of tailored support. In previous work, we aimed to capture this heterogeneity by determining subgroups of autistic adults that differed in clinical outcomes: cognitive failures, psychological difficulties, and quality of life (QoL). Two subgroups were identified: a “Feelings of Low Grip” subgroup characterized by experiencing a lower sense of mastery and a higher susceptibility to difficulties in daily life, and a “Feelings of High Grip” subgroup characterized by a higher sense of mastery and lower susceptibility to difficulties in daily life. The current pre-registered study involves a longitudinal extension to determine (a) stability and (b) predictive value of the previously identified two subgroups. Subgroups were identified using community detection based on 14 self-report measures related to demographic, psychological, and lifestyle characteristics in two samples (aged 31–86 years) that were analyzed separately: Sample 1 (<i>N</i><sub>Autism</sub> = 80) measured 5 years after baseline and Sample 2 (<i>N</i><sub>Autism</sub> = 241, <i>N</i><sub>Comparison</sub> = 211) measured 2 years after baseline. The stability over time was assessed based on (a) the number of subgroups, (b) subgroup profiles, and (c) subgroup membership. Predictive validity was assessed for cognitive failures, psychological difficulties, and QoL. Results indicated that autistic and non-autistic adults formed distinct subgroups. Within both autism samples, the two previously identified autism subgroups were replicated at follow-up. Subgroup profiles were similar for >50% of the variables at two-year follow-up, and 21% at five-year follow-up. Moreover, ≥76% remained in the same subgroup at two-year follow-up, and ≥ 57% after 5 years. Subgroup membership was predictive of external clinical outcomes up to 5 years. Thus, this study demonstrated the stability and predictive value of the autism subgroups, especially for the two-year follow-up. A further focus on their clinical utility might increase the aptness of support, and may provide more insight into the aging process when being autistic.</p>","PeriodicalId":131,"journal":{"name":"Autism Research","volume":null,"pages":null},"PeriodicalIF":4.7,"publicationDate":"2024-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/aur.3116","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140013823","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sarah M. Furnier, Ronald Gangnon, Julie L. Daniels, Susan Ellis Weismer, Cy Nadler, Karen Pazol, Nuri M. Reyes, Steven Rosenberg, Eric Rubenstein, Lisa D. Wiggins, Marshalyn Yeargin-Allsopp, Maureen S. Durkin
Intellectual disability (ID) commonly co-occurs in children with autism. Although diagnostic criteria for ID require impairments in both cognitive and adaptive functioning, most population-based estimates of the frequency of co-occurring ID in children with autism—including studies of racial and ethnic disparities in co-occurring autism and ID—base the definition of ID solely on cognitive scores. The goal of this analysis was to examine the effect of including both cognitive and adaptive behavior criteria on estimates of co-occurring ID in a well-characterized sample of 2- to 5-year-old children with autism. Participants included 3264 children with research or community diagnoses of autism enrolled in the population-based Study to Explore Early Development (SEED) phases 1–3. Based only on Mullen Scales of Early Learning (MSEL) composite cognitive scores, 62.9% (95% confidence interval [CI]: 61.1, 64.7%) of children with autism were estimated to have co-occurring ID. After incorporating Vineland Adaptive Behavior Scales, Second Edition (VABS-II) composite or domains criteria, co-occurring ID estimates were reduced to 38.0% (95% CI: 36.2, 39.8%) and 45.0% (95% CI: 43.1, 46.9%), respectively. The increased odds of meeting ID criteria observed for non-Hispanic (NH) Black and Hispanic children relative to NH White children when only MSEL criteria were used were substantially reduced, though not eliminated, after incorporating VABS-II criteria and adjusting for selected socioeconomic variables. This study provides evidence for the importance of considering adaptive behavior as well as socioeconomic disadvantage when describing racial and ethnic disparities in co-occurring ID in epidemiologic studies of autism.
智障(ID)是自闭症儿童的常见并发症。虽然智障的诊断标准要求自闭症儿童同时存在认知和适应功能障碍,但大多数基于人群的自闭症儿童并发智障频率估计(包括关于自闭症和智障并发的种族和民族差异的研究)仅以认知评分作为智障定义的依据。本分析的目的是研究在一个特征明确的 2-5 岁自闭症儿童样本中,同时纳入认知和适应行为标准对估计共患 ID 的影响。研究对象包括 3264 名经研究或社区诊断为自闭症的儿童,他们参加了基于人群的早期发展探索研究(SEED)第 1-3 阶段的研究。仅根据穆伦早期学习量表(Mullen Scales of Early Learning,MSEL)的综合认知评分,估计有 62.9% (95% 置信区间 [CI]:61.1, 64.7%)的自闭症儿童同时患有智障。在纳入维尼兰适应行为量表第二版(VABS-II)的综合或领域标准后,共患 ID 的估计值分别降至 38.0%(95% 置信区间 [CI]:36.2,39.8%)和 45.0%(95% 置信区间 [CI]:43.1,46.9%)。在采用 VABS-II 标准并对选定的社会经济变量进行调整后,非西班牙裔(NH)黑人和西班牙裔儿童与非西班牙裔白人儿童相比,在仅使用 MSEL 标准的情况下,符合 ID 标准的几率增加,但这一几率并未消除。这项研究证明,在自闭症流行病学研究中描述共患 ID 的种族和民族差异时,考虑适应行为和社会经济劣势非常重要。
{"title":"Racial and ethnic disparities in the co-occurrence of intellectual disability and autism: Impact of incorporating measures of adaptive functioning","authors":"Sarah M. Furnier, Ronald Gangnon, Julie L. Daniels, Susan Ellis Weismer, Cy Nadler, Karen Pazol, Nuri M. Reyes, Steven Rosenberg, Eric Rubenstein, Lisa D. Wiggins, Marshalyn Yeargin-Allsopp, Maureen S. Durkin","doi":"10.1002/aur.3107","DOIUrl":"10.1002/aur.3107","url":null,"abstract":"<p>Intellectual disability (ID) commonly co-occurs in children with autism. Although diagnostic criteria for ID require impairments in both cognitive and adaptive functioning, most population-based estimates of the frequency of co-occurring ID in children with autism—including studies of racial and ethnic disparities in co-occurring autism and ID—base the definition of ID solely on cognitive scores. The goal of this analysis was to examine the effect of including both cognitive and adaptive behavior criteria on estimates of co-occurring ID in a well-characterized sample of 2- to 5-year-old children with autism. Participants included 3264 children with research or community diagnoses of autism enrolled in the population-based Study to Explore Early Development (SEED) phases 1–3. Based only on Mullen Scales of Early Learning (MSEL) composite cognitive scores, 62.9% (95% confidence interval [CI]: 61.1, 64.7%) of children with autism were estimated to have co-occurring ID. After incorporating Vineland Adaptive Behavior Scales, Second Edition (VABS-II) composite or domains criteria, co-occurring ID estimates were reduced to 38.0% (95% CI: 36.2, 39.8%) and 45.0% (95% CI: 43.1, 46.9%), respectively. The increased odds of meeting ID criteria observed for non-Hispanic (NH) Black and Hispanic children relative to NH White children when only MSEL criteria were used were substantially reduced, though not eliminated, after incorporating VABS-II criteria and adjusting for selected socioeconomic variables. This study provides evidence for the importance of considering adaptive behavior as well as socioeconomic disadvantage when describing racial and ethnic disparities in co-occurring ID in epidemiologic studies of autism.</p>","PeriodicalId":131,"journal":{"name":"Autism Research","volume":null,"pages":null},"PeriodicalIF":4.7,"publicationDate":"2024-02-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/aur.3107","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139984757","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Parents of Autistic children often modify their participation in leisure, social, and employment activities to meet the caregiving needs of their child. However, few studies have examined the impact this has on caregiver quality of life (QoL). The aim in the current study was to examine the role of participation in a range of activities on QoL amongst primary and secondary caregivers of school-aged Autistic children. Eighty-eight primary (93% mothers) and 63 secondary (91% fathers) caregivers of Autistic children (aged 7- to 12-years) participated in this cross-sectional study, with time pressure, participation, social support, parenting stress, and QoL measured via an online questionnaire. Compared to secondary caregivers, primary caregivers reported fewer employment hours, increased time pressure, less participation in desired activities, and higher perceived responsibility of domestic and child-rearing tasks. Similar levels of leisure frequency, parenting stress, and QoL were identified by both caregivers. Hierarchical regression revealed caregiver participation as important for QoL in both primary and secondary caregivers. However, when measures of caregiver well-being were added to the model, the unique contribution of participation to QoL was reduced, particularly for secondary caregivers. Overall, the findings demonstrate that despite differences in caregiver roles and responsibilities, participation in meaningful activities was important for QoL in all caregivers.
自闭症儿童的父母经常会改变他们参与休闲、社交和就业活动的方式,以满足照顾孩子的需要。然而,很少有研究探讨这对照顾者生活质量(QoL)的影响。本研究旨在探讨学龄自闭症儿童的小学和中学照护者参与一系列活动对生活质量的影响。自闭症儿童(7-12 岁)的 88 名主要照护者(93% 为母亲)和 63 名次要照护者(91% 为父亲)参与了这项横断面研究,研究人员通过在线问卷对时间压力、参与度、社会支持、养育压力和 QoL 进行了测量。与次要照护者相比,主要照护者的工作时间更少,时间压力更大,参与理想活动的次数更少,对家务和育儿任务的责任感更强。两种照顾者的休闲频率、养育压力和 QoL 水平相似。层次回归显示,在主要和次要照顾者中,照顾者的参与对其 QoL 都很重要。然而,如果在模型中加入照顾者幸福感的衡量标准,参与对 QoL 的独特贡献就会降低,尤其是对二级照顾者而言。总之,研究结果表明,尽管照顾者的角色和责任不同,但参与有意义的活动对所有照顾者的 QoL 都很重要。
{"title":"Leisure, community, workforce participation and quality of life in primary and secondary caregivers of autistic children","authors":"Gemma Davy, Josephine Barbaro, Katy Unwin, Megan Clark, Rachel Jellett, Perrin Date, Melanie Muniandy, Cheryl Dissanayake","doi":"10.1002/aur.3113","DOIUrl":"10.1002/aur.3113","url":null,"abstract":"<p>Parents of Autistic children often modify their participation in leisure, social, and employment activities to meet the caregiving needs of their child. However, few studies have examined the impact this has on caregiver quality of life (QoL). The aim in the current study was to examine the role of participation in a range of activities on QoL amongst primary and secondary caregivers of school-aged Autistic children. Eighty-eight primary (93% mothers) and 63 secondary (91% fathers) caregivers of Autistic children (aged 7- to 12-years) participated in this cross-sectional study, with time pressure, participation, social support, parenting stress, and QoL measured via an online questionnaire. Compared to secondary caregivers, primary caregivers reported fewer employment hours, increased time pressure, less participation in desired activities, and higher perceived responsibility of domestic and child-rearing tasks. Similar levels of leisure frequency, parenting stress, and QoL were identified by both caregivers. Hierarchical regression revealed caregiver participation as important for QoL in both primary and secondary caregivers. However, when measures of caregiver well-being were added to the model, the unique contribution of participation to QoL was reduced, particularly for secondary caregivers. Overall, the findings demonstrate that despite differences in caregiver roles and responsibilities, participation in meaningful activities was important for QoL in all caregivers.</p>","PeriodicalId":131,"journal":{"name":"Autism Research","volume":null,"pages":null},"PeriodicalIF":4.7,"publicationDate":"2024-02-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/aur.3113","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139984756","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Jasminder Kaur Amarjit Singh, Wong Hoi Ling, Ranjini S. Sivanesom, Cindy Chan Su Huay, Audrey Chong Shuk Lan
Autism spectrum disorder (ASD) is a complex neurodevelopmental disorder. Despite the absence of a cure, early diagnosis and intensive early intervention can improve the outcomes. However, little is known about the median age at ASD diagnosis in Malaysia or the child/family characteristics associated with early diagnosis. Therefore, this study aimed to determine the median age at ASD diagnosis among Malaysian children presenting to the country's largest public tertiary neurodevelopmental center and to investigate the possible demographic, child, and family characteristics associated with an early age at diagnosis. Data were collected between February 2017 and February 2019 from a database maintained by the child development unit of the country's largest publicly funded tertiary hospital, containing data from an ethnically diverse population. Among Malaysian children attending the clinic, the median age at ASD diagnosis was 48 months. Early autism diagnosis (<36 months of age) was associated with increased severity of social communication and interaction impairments, coexisting intellectual impairment, children from high socioeconomic status families, and children who receive joint care from their families and a maid or babysitter. The study findings highlight the socioeconomic inequalities in the country, a lack of parental awareness of early ASD signs, and the presence of cultural influences on the age at diagnosis of ASD.
{"title":"Age at autism spectrum disorder diagnosis and its association with child and family characteristics in a tertiary care hospital in Malaysia","authors":"Jasminder Kaur Amarjit Singh, Wong Hoi Ling, Ranjini S. Sivanesom, Cindy Chan Su Huay, Audrey Chong Shuk Lan","doi":"10.1002/aur.3106","DOIUrl":"10.1002/aur.3106","url":null,"abstract":"<p>Autism spectrum disorder (ASD) is a complex neurodevelopmental disorder. Despite the absence of a cure, early diagnosis and intensive early intervention can improve the outcomes. However, little is known about the median age at ASD diagnosis in Malaysia or the child/family characteristics associated with early diagnosis. Therefore, this study aimed to determine the median age at ASD diagnosis among Malaysian children presenting to the country's largest public tertiary neurodevelopmental center and to investigate the possible demographic, child, and family characteristics associated with an early age at diagnosis. Data were collected between February 2017 and February 2019 from a database maintained by the child development unit of the country's largest publicly funded tertiary hospital, containing data from an ethnically diverse population. Among Malaysian children attending the clinic, the median age at ASD diagnosis was 48 months. Early autism diagnosis (<36 months of age) was associated with increased severity of social communication and interaction impairments, coexisting intellectual impairment, children from high socioeconomic status families, and children who receive joint care from their families and a maid or babysitter. The study findings highlight the socioeconomic inequalities in the country, a lack of parental awareness of early ASD signs, and the presence of cultural influences on the age at diagnosis of ASD.</p>","PeriodicalId":131,"journal":{"name":"Autism Research","volume":null,"pages":null},"PeriodicalIF":4.7,"publicationDate":"2024-02-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139941352","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}