Autistic and autism community perspectives on infant and family support in the first two years of life: Findings from a community consultation survey / Catherine A. BENT in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2282-2296 Titre : Autistic and autism community perspectives on infant and family support in the first two years of life: Findings from a community consultation survey Type de document : texte imprimé Auteurs : Catherine A. BENT, Auteur ; Alexandra AULICH, Auteur ; Christos CONSTANTINE, Auteur ; Esther FIDOCK, Auteur ; Patrick DWYER, Auteur ; Cherie C. GREEN, Auteur ; Jodie SMITH, Auteur ; Ava GURBA, Auteur ; Lucas T HARRINGTON, Auteur ; Katherine E. GORE, Auteur ; Aspasia Stacey RABBA, Auteur ; Lauren N AYTON, Auteur ; Kathryn FORDYCE, Auteur ; Jonathan GREEN, Auteur ; Rachel JELLETT, Auteur ; Lyndel KENNEDY, Auteur ; Katherine E. MACDUFFIE, Auteur ; Shoba S. MEERA, Auteur ; Linda R. WATSON, Auteur ; Andrew J.O. WHITEHOUSE, Auteur ; Kristelle HUDRY, Auteur Article en page(s) : p.2282-2296 Langues : Anglais (eng) Mots-clés : autism  autistic  infancy  intervention  neurodiversity  parenting  participatory research  support Index. décimale : PER Périodiques Résumé : Emerging evidence suggests parenting supports implemented in the first 2 years of life may influence developmental outcomes for infants more likely to be Autistic. Yet questions remain about acceptability of these supports to the Autistic and autism communities. Through mixed-methods participatory research - co-designed and produced by Autistic and non-Autistic researchers - we sought diverse community perspectives on this topic, including to understand the relative acceptability of different support options. A total of 238 participants completed our online survey: 128 Autistic and 110 non-Autistic respondents, some of whom also self-identified as parents of Autistic, otherwise neurodivergent, and/or neurotypical children, and/or as health/education professionals and/or researchers. Most participants agreed that very-early-in-life approaches should help parents understand and support their children, and disagreed that these should seek to suppress autistic behaviour. Most agreed with the goal of respecting infant autonomy, and that parent education towards creating sensitive, accommodating environments could be appropriate, albeit with nuanced differences-of-opinion regarding the acceptability of specific therapeutic approaches. Participants generally endorsed the terms 'support' (vs 'intervention') and 'early-in-life' (vs 'at-risk'/'pre-emptive'). Engaging equal-power partnerships for the development, delivery of, and discourse around early-in-life autism supports will ensure end-user community values and needs are respected.Lay abstract Most support programmes for Autistic children are available only after they are diagnosed. Research suggests that parenting supports may be helpful for parents and their infants, when provided in the first 2 years of life - before a formal diagnosis is given, but when information suggests an infant is more likely to be Autistic. However, we do not know how acceptable these types of supports might be to the Autistic and autism communities. We asked 238 Autistic and non-autistic people - some of whom were parents, and some of whom were professionals working in research, health and education - about their perspectives on very-early supports. People generally agreed that it could be acceptable to work with parents to help them understand and support their child?s specific needs and unique ways of communicating. People suggested a variety of support strategies could be acceptable, including parent education, changing the environment to meet an infant?s needs, and creating opportunities for infants' to make choices and exercise control. People preferred respectful and accurate language - including the term 'support' (rather than 'intervention') and 'early-in-life' (rather than 'at-risk' of autism, or 'pre-emptive' when describing developmental stage). Continuing to work with community members will help to make sure autism support programmes are relevant and helpful. En ligne : https://dx.doi.org/10.1177/13623613241262077 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] Autistic and autism community perspectives on infant and family support in the first two years of life: Findings from a community consultation survey [texte imprimé] / Catherine A. BENT, Auteur ; Alexandra AULICH, Auteur ; Christos CONSTANTINE, Auteur ; Esther FIDOCK, Auteur ; Patrick DWYER, Auteur ; Cherie C. GREEN, Auteur ; Jodie SMITH, Auteur ; Ava GURBA, Auteur ; Lucas T HARRINGTON, Auteur ; Katherine E. GORE, Auteur ; Aspasia Stacey RABBA, Auteur ; Lauren N AYTON, Auteur ; Kathryn FORDYCE, Auteur ; Jonathan GREEN, Auteur ; Rachel JELLETT, Auteur ; Lyndel KENNEDY, Auteur ; Katherine E. MACDUFFIE, Auteur ; Shoba S. MEERA, Auteur ; Linda R. WATSON, Auteur ; Andrew J.O. WHITEHOUSE, Auteur ; Kristelle HUDRY, Auteur . - p.2282-2296. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2282-2296 Mots-clés : autism  autistic  infancy  intervention  neurodiversity  parenting  participatory research  support Index. décimale : PER Périodiques Résumé : Emerging evidence suggests parenting supports implemented in the first 2 years of life may influence developmental outcomes for infants more likely to be Autistic. Yet questions remain about acceptability of these supports to the Autistic and autism communities. Through mixed-methods participatory research - co-designed and produced by Autistic and non-Autistic researchers - we sought diverse community perspectives on this topic, including to understand the relative acceptability of different support options. A total of 238 participants completed our online survey: 128 Autistic and 110 non-Autistic respondents, some of whom also self-identified as parents of Autistic, otherwise neurodivergent, and/or neurotypical children, and/or as health/education professionals and/or researchers. Most participants agreed that very-early-in-life approaches should help parents understand and support their children, and disagreed that these should seek to suppress autistic behaviour. Most agreed with the goal of respecting infant autonomy, and that parent education towards creating sensitive, accommodating environments could be appropriate, albeit with nuanced differences-of-opinion regarding the acceptability of specific therapeutic approaches. Participants generally endorsed the terms 'support' (vs 'intervention') and 'early-in-life' (vs 'at-risk'/'pre-emptive'). Engaging equal-power partnerships for the development, delivery of, and discourse around early-in-life autism supports will ensure end-user community values and needs are respected.Lay abstract Most support programmes for Autistic children are available only after they are diagnosed. Research suggests that parenting supports may be helpful for parents and their infants, when provided in the first 2 years of life - before a formal diagnosis is given, but when information suggests an infant is more likely to be Autistic. However, we do not know how acceptable these types of supports might be to the Autistic and autism communities. We asked 238 Autistic and non-autistic people - some of whom were parents, and some of whom were professionals working in research, health and education - about their perspectives on very-early supports. People generally agreed that it could be acceptable to work with parents to help them understand and support their child?s specific needs and unique ways of communicating. People suggested a variety of support strategies could be acceptable, including parent education, changing the environment to meet an infant?s needs, and creating opportunities for infants' to make choices and exercise control. People preferred respectful and accurate language - including the term 'support' (rather than 'intervention') and 'early-in-life' (rather than 'at-risk' of autism, or 'pre-emptive' when describing developmental stage). Continuing to work with community members will help to make sure autism support programmes are relevant and helpful. En ligne : https://dx.doi.org/10.1177/13623613241262077 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566

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 Problems and Trajectories of Restricted and Repetitive Behaviors in Children with Neurodevelopmental Disabilities / Katherine E. MACDUFFIE in Journal of Autism and Developmental Disorders, 50-11 (November 2020)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 50-11 (November 2020) . - p.3844-3856 Titre : Sleep Problems and Trajectories of Restricted and Repetitive Behaviors in Children with Neurodevelopmental Disabilities Type de document : texte imprimé Auteurs : Katherine E. MACDUFFIE, Auteur ; Jeffrey MUNSON, Auteur ; Jessica GREENSON, Auteur ; Teresa M. WARD, Auteur ; Sally J. ROGERS, Auteur ; Geraldine DAWSON, Auteur ; Annette ESTES, Auteur Article en page(s) : p.3844-3856 Langues : Anglais (eng) Mots-clés : Anxiety  Autism spectrum disorder  Developmental delay  Neurodevelopmental disability  Repetitive behaviors  Restricted behaviors  Sleep Index. décimale : PER Périodiques Résumé : Sleep problems are prevalent in children with neurodevelopmental disabilities and are associated with the expression of restricted and repetitive behaviors (RRBs). Children (n = 57) with autism spectrum disorder (ASD, n = 38) or developmental delay (DD, n = 19) participated in multiple assessments of intellectual ability, ASD symptoms, and RRBs (3 timepoints for ASD, 2 for DD). Sleep problems assessed at age 4 via parent report were associated with trajectories of higher-order RRBs (sameness/ritualistic/compulsive behaviors) from age 2-6 in the ASD group, and from age 2-4 in the DD group, even after controlling for intellectual ability, social-affective symptoms, and anxiety. Trajectories of stereotyped/restricted behaviors were unrelated to sleep problems. Sleep problems were associated with trajectories of higher-order (but not lower-order) RRBs in a transdiagnostic sample. En ligne : http://dx.doi.org/10.1007/s10803-020-04438-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=432 [article] Sleep Problems and Trajectories of Restricted and Repetitive Behaviors in Children with Neurodevelopmental Disabilities [texte imprimé] / Katherine E. MACDUFFIE, Auteur ; Jeffrey MUNSON, Auteur ; Jessica GREENSON, Auteur ; Teresa M. WARD, Auteur ; Sally J. ROGERS, Auteur ; Geraldine DAWSON, Auteur ; Annette ESTES, Auteur . - p.3844-3856. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 50-11 (November 2020) . - p.3844-3856 Mots-clés : Anxiety  Autism spectrum disorder  Developmental delay  Neurodevelopmental disability  Repetitive behaviors  Restricted behaviors  Sleep Index. décimale : PER Périodiques Résumé : Sleep problems are prevalent in children with neurodevelopmental disabilities and are associated with the expression of restricted and repetitive behaviors (RRBs). Children (n = 57) with autism spectrum disorder (ASD, n = 38) or developmental delay (DD, n = 19) participated in multiple assessments of intellectual ability, ASD symptoms, and RRBs (3 timepoints for ASD, 2 for DD). Sleep problems assessed at age 4 via parent report were associated with trajectories of higher-order RRBs (sameness/ritualistic/compulsive behaviors) from age 2-6 in the ASD group, and from age 2-4 in the DD group, even after controlling for intellectual ability, social-affective symptoms, and anxiety. Trajectories of stereotyped/restricted behaviors were unrelated to sleep problems. Sleep problems were associated with trajectories of higher-order (but not lower-order) RRBs in a transdiagnostic sample. En ligne : http://dx.doi.org/10.1007/s10803-020-04438-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=432

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