Parent attitudes towards predictive testing for autism in the first year of life / Aurora M. WASHINGTON in Journal of Neurodevelopmental Disorders, 16 (2024)  

Public ISBD [article]  inJournal of Neurodevelopmental Disorders > 16 (2024) Titre : Parent attitudes towards predictive testing for autism in the first year of life Type de document : texte imprimé Auteurs : Aurora M. WASHINGTON, Auteur ; Amanda H. MERCER, Auteur ; Catherine A. BURROWS, Auteur ; Stephen R. DAGER, Auteur ; Jed T. ELISON, Auteur ; Annette M. ESTES, Auteur ; Rebecca GRZADZINSKI, Auteur ; Chimei LEE, Auteur ; Joseph PIVEN, Auteur ; John R. Jr PRUETT, Auteur ; Mark D. SHEN, Auteur ; Benjamin WILFOND, Auteur ; Jason WOLFF, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Katherine E. MACDUFFIE, Auteur Langues : Anglais (eng) Mots-clés : Humans  Parents  Infant  Male  Female  Autistic Disorder/diagnosis  Adult  Biomarkers  Qualitative Research  Autism Spectrum Disorder/diagnosis  Autism  Bioethics  Prediction  Stakeholder engagement Index. décimale : PER Périodiques Résumé : BACKGROUND: Emerging biomarker technologies (e.g., MRI, EEG, digital phenotyping, eye-tracking) have potential to move the identification of autism into the first year of life. We investigated the perspectives of parents about the anticipated utility and impact of predicting later autism diagnosis from a biomarker-based test in infancy. METHODS: Parents of infants were interviewed to ascertain receptiveness and perspectives on early (6-12 months) prediction of autism using emerging biomarker technologies. One group had experience parenting an older autistic child (n=30), and the other had no prior autism parenting experience (n=25). Parent responses were analyzed using inductive qualitative coding methods. RESULTS: Almost all parents in both groups were interested in predictive testing for autism, with some stating they would seek testing only if concerned about their infant's development. The primary anticipated advantage of testing was to enable access to earlier intervention. Parents also described the anticipated emotions they would feel in response to test results, actions they might take upon learning their infant was likely to develop autism, attitudes towards predicting a child's future support needs, and the potential impacts of inaccurate prediction. CONCLUSION: In qualitative interviews, parents of infants with and without prior autism experience shared their anticipated motivations and concerns about predictive testing for autism in the first year of life. The primary reported motivators for testing-to have more time to prepare and intervene early-could be constrained by familial resources and service availability. Implications for ethical communication of results, equitable early intervention, and future research are discussed. En ligne : https://dx.doi.org/10.1186/s11689-024-09561-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=575 [article] Parent attitudes towards predictive testing for autism in the first year of life [texte imprimé] / Aurora M. WASHINGTON, Auteur ; Amanda H. MERCER, Auteur ; Catherine A. BURROWS, Auteur ; Stephen R. DAGER, Auteur ; Jed T. ELISON, Auteur ; Annette M. ESTES, Auteur ; Rebecca GRZADZINSKI, Auteur ; Chimei LEE, Auteur ; Joseph PIVEN, Auteur ; John R. Jr PRUETT, Auteur ; Mark D. SHEN, Auteur ; Benjamin WILFOND, Auteur ; Jason WOLFF, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Katherine E. MACDUFFIE, Auteur. Langues : Anglais (eng) in Journal of Neurodevelopmental Disorders > 16 (2024) Mots-clés : Humans  Parents  Infant  Male  Female  Autistic Disorder/diagnosis  Adult  Biomarkers  Qualitative Research  Autism Spectrum Disorder/diagnosis  Autism  Bioethics  Prediction  Stakeholder engagement Index. décimale : PER Périodiques Résumé : BACKGROUND: Emerging biomarker technologies (e.g., MRI, EEG, digital phenotyping, eye-tracking) have potential to move the identification of autism into the first year of life. We investigated the perspectives of parents about the anticipated utility and impact of predicting later autism diagnosis from a biomarker-based test in infancy. METHODS: Parents of infants were interviewed to ascertain receptiveness and perspectives on early (6-12 months) prediction of autism using emerging biomarker technologies. One group had experience parenting an older autistic child (n=30), and the other had no prior autism parenting experience (n=25). Parent responses were analyzed using inductive qualitative coding methods. RESULTS: Almost all parents in both groups were interested in predictive testing for autism, with some stating they would seek testing only if concerned about their infant's development. The primary anticipated advantage of testing was to enable access to earlier intervention. Parents also described the anticipated emotions they would feel in response to test results, actions they might take upon learning their infant was likely to develop autism, attitudes towards predicting a child's future support needs, and the potential impacts of inaccurate prediction. CONCLUSION: In qualitative interviews, parents of infants with and without prior autism experience shared their anticipated motivations and concerns about predictive testing for autism in the first year of life. The primary reported motivators for testing-to have more time to prepare and intervene early-could be constrained by familial resources and service availability. Implications for ethical communication of results, equitable early intervention, and future research are discussed. En ligne : https://dx.doi.org/10.1186/s11689-024-09561-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=575

Sleep in Infants with Down Syndrome or Familial Likelihood of Autism in the First Year of Life / Emma R. COCO in Journal of Autism and Developmental Disorders, 55-12 (December 2025)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 55-12 (December 2025) . - p.4439-4449 Titre : Sleep in Infants with Down Syndrome or Familial Likelihood of Autism in the First Year of Life Type de document : texte imprimé Auteurs : Emma R. COCO, Auteur ; Jeffrey MUNSON, Auteur ; Tanya ST JOHN, Auteur ; Stephen R. DAGER, Auteur ; Kelly BOTTERON, Auteur ; Jed ELISON, Auteur ; Dea GARIC, Auteur ; Heather HAZLETT, Auteur ; Chimei LEE, Auteur ; Natasha MARRUS, Auteur ; John R. PRUETT, Auteur ; Robert SCHULTZ, Auteur ; Mark SHEN, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Joseph PIVEN, Auteur ; Annette ESTES, Auteur Article en page(s) : p.4439-4449 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Sleep problems have been associated with atypical development, but there is limited understanding of when sleep problems arise and how they differ across clinical populations. We aimed to evaluate sleep characteristics of infants with Down syndrome (DS), higher familial likelihood of autism (HL) and lower familial likelihood of autism (LL) at 6 and 12 months of age. Participants were from two longitudinal, multi-site, studies. Sleep was estimated by parent report on the Brief Infant Sleep Questionnaire at 6 months (59 DS, 173 HL, 54 LL); 12 months (58 DS, 129 HL, 30 LL); and in a longitudinal subset at both 6 and 12 months (100 HL; 23 LL; 33 DS). At 6-months, DS parents reported less concern about infant sleep and less night wakefulness than LL parents; HL parents reported longer sleep onset latency (SOL). At 12 months DS parents reported less night sleep and more night wakefulness; HL parents reported less night sleep, more night wakefulness and longer SOL compared to LL. Night wakefulness increased significantly in the DS and HL groups from 6 to 12 months of age. A higher proportion of DS and HL infants decreased Night Sleep and increased Night Wakefulness compared with the LL group. A higher proportion of DS infants increased SOL compared with the LL group. Sleep alterations are present in the first year of life and may differ in DS and HL infants. The mechanisms behind these sleep alterations may be an important early intervention target. En ligne : https://doi.org/10.1007/s10803-025-06927-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=572 [article] Sleep in Infants with Down Syndrome or Familial Likelihood of Autism in the First Year of Life [texte imprimé] / Emma R. COCO, Auteur ; Jeffrey MUNSON, Auteur ; Tanya ST JOHN, Auteur ; Stephen R. DAGER, Auteur ; Kelly BOTTERON, Auteur ; Jed ELISON, Auteur ; Dea GARIC, Auteur ; Heather HAZLETT, Auteur ; Chimei LEE, Auteur ; Natasha MARRUS, Auteur ; John R. PRUETT, Auteur ; Robert SCHULTZ, Auteur ; Mark SHEN, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Joseph PIVEN, Auteur ; Annette ESTES, Auteur . - p.4439-4449. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-12 (December 2025) . - p.4439-4449 Index. décimale : PER Périodiques Résumé : Sleep problems have been associated with atypical development, but there is limited understanding of when sleep problems arise and how they differ across clinical populations. We aimed to evaluate sleep characteristics of infants with Down syndrome (DS), higher familial likelihood of autism (HL) and lower familial likelihood of autism (LL) at 6 and 12 months of age. Participants were from two longitudinal, multi-site, studies. Sleep was estimated by parent report on the Brief Infant Sleep Questionnaire at 6 months (59 DS, 173 HL, 54 LL); 12 months (58 DS, 129 HL, 30 LL); and in a longitudinal subset at both 6 and 12 months (100 HL; 23 LL; 33 DS). At 6-months, DS parents reported less concern about infant sleep and less night wakefulness than LL parents; HL parents reported longer sleep onset latency (SOL). At 12 months DS parents reported less night sleep and more night wakefulness; HL parents reported less night sleep, more night wakefulness and longer SOL compared to LL. Night wakefulness increased significantly in the DS and HL groups from 6 to 12 months of age. A higher proportion of DS and HL infants decreased Night Sleep and increased Night Wakefulness compared with the LL group. A higher proportion of DS infants increased SOL compared with the LL group. Sleep alterations are present in the first year of life and may differ in DS and HL infants. The mechanisms behind these sleep alterations may be an important early intervention target. En ligne : https://doi.org/10.1007/s10803-025-06927-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=572

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