Coming to understand the child has autism: A process illustrating parents' evolving readiness for engaging in care / Stephen J. GENTLES in Autism, 24-2 (February 2020)  

Public ISBD [article]  inAutism > 24-2 (February 2020) . - p.470-483 Titre : Coming to understand the child has autism: A process illustrating parents' evolving readiness for engaging in care Type de document : texte imprimé Auteurs : Stephen J. GENTLES, Auteur ; David B NICHOLAS, Auteur ; Susan M JACK, Auteur ; K. Ann MCKIBBON, Auteur ; Peter SZATMARI, Auteur Article en page(s) : p.470-483 Langues : Anglais (eng) Mots-clés : caregiver  family-centered care  grounded theory  patient engagement  patient-centered care  pre-diagnosis Index. décimale : PER Périodiques Résumé : LAY ABSTRACT: What is already known about the topic? Parents of children with autism often learn about their child's autism before diagnosis and can spend long periods seeking care (including assessment) before receiving a diagnosis. Meanwhile, parents' readiness to engage in care at this early stage can vary from parent to parent. What this paper adds? This study revealed how parents come to understand their child has autism-on their own terms, rather than from just talking to professionals. It also explained how parents' growing awareness of their child's autism leads them to feel more motivated to engage in care by seeking information and pursuing services. Four "optional steps" described how parents' growing readiness to engage in care at this early stage can vary, depending on their personal process. Implications for practice, research, or policy The results suggest ways that professionals can be more sensitive (a) to parents' varying awareness of autism and (b) to their varying readiness for being involved in early care. They also suggest ways to tailor parent supports to their individual situation and design care that is more family centered. Not all parents want high levels of involvement. Depending on their personal process, some parents may need care and support that is directed at them before feeling ready for professionals to engage them in care directed at the child. En ligne : http://dx.doi.org/10.1177/1362361319874647 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=415 [article] Coming to understand the child has autism: A process illustrating parents' evolving readiness for engaging in care [texte imprimé] / Stephen J. GENTLES, Auteur ; David B NICHOLAS, Auteur ; Susan M JACK, Auteur ; K. Ann MCKIBBON, Auteur ; Peter SZATMARI, Auteur . - p.470-483. Langues : Anglais (eng) in Autism > 24-2 (February 2020) . - p.470-483 Mots-clés : caregiver  family-centered care  grounded theory  patient engagement  patient-centered care  pre-diagnosis Index. décimale : PER Périodiques Résumé : LAY ABSTRACT: What is already known about the topic? Parents of children with autism often learn about their child's autism before diagnosis and can spend long periods seeking care (including assessment) before receiving a diagnosis. Meanwhile, parents' readiness to engage in care at this early stage can vary from parent to parent. What this paper adds? This study revealed how parents come to understand their child has autism-on their own terms, rather than from just talking to professionals. It also explained how parents' growing awareness of their child's autism leads them to feel more motivated to engage in care by seeking information and pursuing services. Four "optional steps" described how parents' growing readiness to engage in care at this early stage can vary, depending on their personal process. Implications for practice, research, or policy The results suggest ways that professionals can be more sensitive (a) to parents' varying awareness of autism and (b) to their varying readiness for being involved in early care. They also suggest ways to tailor parent supports to their individual situation and design care that is more family centered. Not all parents want high levels of involvement. Depending on their personal process, some parents may need care and support that is directed at them before feeling ready for professionals to engage them in care directed at the child. En ligne : http://dx.doi.org/10.1177/1362361319874647 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=415

The Association Between Autism Symptomatology and Adaptive Functioning Over Six Months: Findings from the Pilot Phase of the PARC Study / Tamar David COHEN in Journal of Autism and Developmental Disorders, 55-10 (October 2025)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 55-10 (October 2025) . - p.3582-3589 Titre : The Association Between Autism Symptomatology and Adaptive Functioning Over Six Months: Findings from the Pilot Phase of the PARC Study Type de document : texte imprimé Auteurs : Tamar David COHEN, Auteur ; Judah KOLLER, Auteur ; Eric DUKU, Auteur ; Anna KATA, Auteur ; Colleen ANDERSON, Auteur ; Teresa BENNETT, Auteur ; Amber CAUWENBERGS, Auteur ; Kathleen DEKKER, Auteur ; Briano DIREZZE, Auteur ; Irene E. DRMIC, Auteur ; Judy EERKES, Auteur ; Stephen J. GENTLES, Auteur ; Kathy GEORGIADES, Auteur ; Lorraine HOULT, Auteur ; Olaf Kraus DE CAMARGO, Auteur ; Bill MAHONEY, Auteur ; Ronit MESTERMAN, Auteur ; Olivia NG, Auteur ; Sue ROBERTSON, Auteur ; Caroline RONCADIN, Auteur ; Stelios GEORGIADES, Auteur Article en page(s) : p.3582-3589 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : In the context of developmental trajectories, the association between adaptive functioning and core autism symptomatology remains unclear. The current study examines the associations of adaptive behavior with autism symptom sub-domains and with different facets of symptom expression. En ligne : https://doi.org/10.1007/s10803-024-06460-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=568 [article] The Association Between Autism Symptomatology and Adaptive Functioning Over Six Months: Findings from the Pilot Phase of the PARC Study [texte imprimé] / Tamar David COHEN, Auteur ; Judah KOLLER, Auteur ; Eric DUKU, Auteur ; Anna KATA, Auteur ; Colleen ANDERSON, Auteur ; Teresa BENNETT, Auteur ; Amber CAUWENBERGS, Auteur ; Kathleen DEKKER, Auteur ; Briano DIREZZE, Auteur ; Irene E. DRMIC, Auteur ; Judy EERKES, Auteur ; Stephen J. GENTLES, Auteur ; Kathy GEORGIADES, Auteur ; Lorraine HOULT, Auteur ; Olaf Kraus DE CAMARGO, Auteur ; Bill MAHONEY, Auteur ; Ronit MESTERMAN, Auteur ; Olivia NG, Auteur ; Sue ROBERTSON, Auteur ; Caroline RONCADIN, Auteur ; Stelios GEORGIADES, Auteur . - p.3582-3589. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-10 (October 2025) . - p.3582-3589 Index. décimale : PER Périodiques Résumé : In the context of developmental trajectories, the association between adaptive functioning and core autism symptomatology remains unclear. The current study examines the associations of adaptive behavior with autism symptom sub-domains and with different facets of symptom expression. En ligne : https://doi.org/10.1007/s10803-024-06460-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=568

Trajectory research in children with an autism diagnosis: A scoping review / Stephen J. GENTLES in Autism, 28-3 (March 2024)  

Public ISBD [article]  inAutism > 28-3 (March 2024) . - p.540-564 Titre : Trajectory research in children with an autism diagnosis: A scoping review Type de document : texte imprimé Auteurs : Stephen J. GENTLES, Auteur ; Elise C. NG-CORDELL, Auteur ; Michelle C. HUNSCHE, Auteur ; Alana J. MCVEY, Auteur ; E. Dimitra BEDNAR, Auteur ; Michael G. DEGROOTE, Auteur ; Yun-Ju CHEN, Auteur ; Eric DUKU, Auteur ; Connor M. KERNS, Auteur ; Laura BANFIELD, Auteur ; Peter SZATMARI, Auteur ; Stelios GEORGIADES, Auteur Article en page(s) : p.540-564 Langues : Anglais (eng) Mots-clés : autism  child development  longitudinal research  scoping review  trajectory studies Index. décimale : PER Périodiques Résumé : Researchers increasingly employ longitudinal trajectory methods to understand developmental pathways of people on the autism spectrum across the lifespan. By assessing developmental or health-related outcome domains at three or more timepoints, trajectory studies can characterize their shape and varying rates of change over time. The purpose of this scoping review was to identify and summarize the published breadth of research that uses a trajectory study design to examine development in children (to age 18 years) diagnosed with autism. Using a systematic search and screening procedure, 103 studies were included. This review summarizes methodological characteristics across studies including the varying statistical approaches used. A series of figures maps where published research is available across 10 outcome domains and the ages over which children have been followed. Evidence gaps, informed by the perspectives of the autistic and caregiver stakeholders that were engaged in this review, are discussed. We recommend that future trajectory research addresses the absence of studies from low- and middle-income countries, considers longitudinal assessment of outcome domains that caregivers and autistic people consider meaningful, and plans follow-up periods with assessment timepoints that cover the gaps in ages where more outcome-specific data are needed. Lay Abstract The types of outcomes studied in children on the autism spectrum include clinical characteristics, such as social functioning, communication, language, or autism symptoms. Research that measures these outcomes at multiple timepoints is useful to improve our understanding of what to expect as children develop. In trajectory studies, researchers assess outcomes at three or more timepoints. This method has advantages over two-timepoint studies because it allows researchers to describe changes in the speed of development, such as accelerations, plateaus, or slowdowns. We identified and reviewed 103 published trajectory studies in children (to age 18 years) with an autism diagnosis. Importantly, we did not include studies of treatments or their effects, nor did we summarize the results of studies. Instead, this review summarizes the characteristics of the available published research, including the methods used, the many different outcomes that have been studied over time and the ages over which they have been studied. This summary may be of interest to autistic people and caregivers (parents) who want to know about the existence of research that provides answers about what to expect during an autistic child?s development. We have recommended that future trajectory research efforts try to make up for the lack of studies from low- and middle-income countries; that more attention is given to the following outcomes that are meaningful to caregivers and autistic people; and to try to fill in the age gaps where more outcome-specific data are needed. En ligne : https://dx.doi.org/10.1177/13623613231170280 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=523 [article] Trajectory research in children with an autism diagnosis: A scoping review [texte imprimé] / Stephen J. GENTLES, Auteur ; Elise C. NG-CORDELL, Auteur ; Michelle C. HUNSCHE, Auteur ; Alana J. MCVEY, Auteur ; E. Dimitra BEDNAR, Auteur ; Michael G. DEGROOTE, Auteur ; Yun-Ju CHEN, Auteur ; Eric DUKU, Auteur ; Connor M. KERNS, Auteur ; Laura BANFIELD, Auteur ; Peter SZATMARI, Auteur ; Stelios GEORGIADES, Auteur . - p.540-564. Langues : Anglais (eng) in Autism > 28-3 (March 2024) . - p.540-564 Mots-clés : autism  child development  longitudinal research  scoping review  trajectory studies Index. décimale : PER Périodiques Résumé : Researchers increasingly employ longitudinal trajectory methods to understand developmental pathways of people on the autism spectrum across the lifespan. By assessing developmental or health-related outcome domains at three or more timepoints, trajectory studies can characterize their shape and varying rates of change over time. The purpose of this scoping review was to identify and summarize the published breadth of research that uses a trajectory study design to examine development in children (to age 18 years) diagnosed with autism. Using a systematic search and screening procedure, 103 studies were included. This review summarizes methodological characteristics across studies including the varying statistical approaches used. A series of figures maps where published research is available across 10 outcome domains and the ages over which children have been followed. Evidence gaps, informed by the perspectives of the autistic and caregiver stakeholders that were engaged in this review, are discussed. We recommend that future trajectory research addresses the absence of studies from low- and middle-income countries, considers longitudinal assessment of outcome domains that caregivers and autistic people consider meaningful, and plans follow-up periods with assessment timepoints that cover the gaps in ages where more outcome-specific data are needed. Lay Abstract The types of outcomes studied in children on the autism spectrum include clinical characteristics, such as social functioning, communication, language, or autism symptoms. Research that measures these outcomes at multiple timepoints is useful to improve our understanding of what to expect as children develop. In trajectory studies, researchers assess outcomes at three or more timepoints. This method has advantages over two-timepoint studies because it allows researchers to describe changes in the speed of development, such as accelerations, plateaus, or slowdowns. We identified and reviewed 103 published trajectory studies in children (to age 18 years) with an autism diagnosis. Importantly, we did not include studies of treatments or their effects, nor did we summarize the results of studies. Instead, this review summarizes the characteristics of the available published research, including the methods used, the many different outcomes that have been studied over time and the ages over which they have been studied. This summary may be of interest to autistic people and caregivers (parents) who want to know about the existence of research that provides answers about what to expect during an autistic child?s development. We have recommended that future trajectory research efforts try to make up for the lack of studies from low- and middle-income countries; that more attention is given to the following outcomes that are meaningful to caregivers and autistic people; and to try to fill in the age gaps where more outcome-specific data are needed. En ligne : https://dx.doi.org/10.1177/13623613231170280 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=523

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