31 recherche sur le mot-clé 'support'

Support Needs of Fathers and Mothers of Children and Adolescents with Autism Spectrum Disorder / Sigan L. HARTLEY in Journal of Autism and Developmental Disorders, 45-6 (June 2015)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 45-6 (June 2015) . - p.1636-1648 Titre : Support Needs of Fathers and Mothers of Children and Adolescents with Autism Spectrum Disorder Type de document : texte imprimé Auteurs : Sigan L. HARTLEY, Auteur ; Haley M. SCHULTZ, Auteur Article en page(s) : p.1636-1648 Langues : Anglais (eng) Mots-clés : Autism  Support  Services  Parent  Father Index. décimale : PER Périodiques Résumé : Little research has examined the support needs of mothers versus fathers of children and adolescents with autism spectrum disorder (ASD). We identified and compared the important and unmet support needs of mothers and fathers, and evaluated their association with family and child factors, within 73 married couples who had a child or adolescent with ASD. Mothers had a higher number of important support needs and higher proportion of important support needs that are unmet than fathers. Multilevel modeling indicated that child age, co-occurring behavior problems, presence of intellectual disability, parent education, and household income were related to support needs. Findings offer insight into the overlapping and unique support needs of mothers and fathers of children and adolescents with ASD. En ligne : http://dx.doi.org/10.1007/s10803-014-2318-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=259 [article] Support Needs of Fathers and Mothers of Children and Adolescents with Autism Spectrum Disorder [texte imprimé] / Sigan L. HARTLEY, Auteur ; Haley M. SCHULTZ, Auteur . - p.1636-1648. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 45-6 (June 2015) . - p.1636-1648 Mots-clés : Autism  Support  Services  Parent  Father Index. décimale : PER Périodiques Résumé : Little research has examined the support needs of mothers versus fathers of children and adolescents with autism spectrum disorder (ASD). We identified and compared the important and unmet support needs of mothers and fathers, and evaluated their association with family and child factors, within 73 married couples who had a child or adolescent with ASD. Mothers had a higher number of important support needs and higher proportion of important support needs that are unmet than fathers. Multilevel modeling indicated that child age, co-occurring behavior problems, presence of intellectual disability, parent education, and household income were related to support needs. Findings offer insight into the overlapping and unique support needs of mothers and fathers of children and adolescents with ASD. En ligne : http://dx.doi.org/10.1007/s10803-014-2318-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=259

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

Being able to be myself: Understanding autonomy and autonomy-support from the perspectives of autistic adults with intellectual disabilities / Heather M. BROWN ; Anne BORDEN ; Christina DEVLIN ; Adam KEDMY ; Austin LEE ; David B. NICHOLAS ; Bethan KINGSLEY ; Sandy THOMPSON-HODGETTS in Autism, 28-12 (December 2024)  

Public ISBD [article]  inAutism > 28-12 (December 2024) . - p.3092-3104 Titre : Being able to be myself: Understanding autonomy and autonomy-support from the perspectives of autistic adults with intellectual disabilities Type de document : texte imprimé Auteurs : Heather M. BROWN, Auteur ; Anne BORDEN, Auteur ; Christina DEVLIN, Auteur ; Adam KEDMY, Auteur ; Austin LEE, Auteur ; David B. NICHOLAS, Auteur ; Bethan KINGSLEY, Auteur ; Sandy THOMPSON-HODGETTS, Auteur Article en page(s) : p.3092-3104 Langues : Anglais (eng) Mots-clés : adulthood  autism  autonomy  choice  opportunity  qualitative  self-determination  support Index. décimale : PER Périodiques Résumé : Self-determination enhances a person s quality of life and is a fundamental human right. According to self-determination theory, autonomy is one of three basic psychological needs that must be met to experience self-determination. The overarching aim of this exploratory study was to learn about autonomy from the perspective of autistic adults with intellectual disability, including what autonomy meant and how participants wanted to be supported to be autonomous. Participants (n = 8; median age = 24) engaged in a variety of participatory methods (e.g. discussions, arts and crafts, games) during weekly sessions. These sessions took place over 7-16 weeks and were each informed by a guiding question related to autonomy. Artifacts, video or audio recordings from each session, and reflexive journals were thematically analyzed. The results support an overarching meaning of autonomy as being able to be themselves. Participants identified (1) choice and control, (2) communicating their way, and (3) safe environments as important and showed us how they wanted to be supported in each of these three areas. We also identified having autistic facilitators as an overarching strategy. These results provide a foundation for implementing change to enhance autonomy for autistic adults with intellectual disabilities. Lay Abstract Autistic young adults with intellectual disabilities want to be autonomous but are less autonomous than other people. However, they can be autonomous with appropriate support. We wanted to learn how we can support autistic adults with intellectual disabilities to be more autonomous. We designed our study with help from five autistic community partners to make sure the research was relevant to autistic people and would improve their lives. We talked with eight autistic young adults with intellectual disabilities about autonomy. We defined "talk" as verbal language, as well as non-verbal cues such as body language, facial expressions, vocalizations, and laughter. We did art projects and played games while we talked. We met in small groups over multiple sessions. Our participants told us that being autonomous meant being able to be themselves. They told us three main ways to support their autonomy: (1) having choice and control, (2) being able to communicate in their own way, and (3) being in a safe environment. Families, support staff, and caregivers can use this information to help autistic young adults with intellectual disabilities to be autonomous. En ligne : https://dx.doi.org/10.1177/13623613241254432 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=543 [article] Being able to be myself: Understanding autonomy and autonomy-support from the perspectives of autistic adults with intellectual disabilities [texte imprimé] / Heather M. BROWN, Auteur ; Anne BORDEN, Auteur ; Christina DEVLIN, Auteur ; Adam KEDMY, Auteur ; Austin LEE, Auteur ; David B. NICHOLAS, Auteur ; Bethan KINGSLEY, Auteur ; Sandy THOMPSON-HODGETTS, Auteur . - p.3092-3104. Langues : Anglais (eng) in Autism > 28-12 (December 2024) . - p.3092-3104 Mots-clés : adulthood  autism  autonomy  choice  opportunity  qualitative  self-determination  support Index. décimale : PER Périodiques Résumé : Self-determination enhances a person s quality of life and is a fundamental human right. According to self-determination theory, autonomy is one of three basic psychological needs that must be met to experience self-determination. The overarching aim of this exploratory study was to learn about autonomy from the perspective of autistic adults with intellectual disability, including what autonomy meant and how participants wanted to be supported to be autonomous. Participants (n = 8; median age = 24) engaged in a variety of participatory methods (e.g. discussions, arts and crafts, games) during weekly sessions. These sessions took place over 7-16 weeks and were each informed by a guiding question related to autonomy. Artifacts, video or audio recordings from each session, and reflexive journals were thematically analyzed. The results support an overarching meaning of autonomy as being able to be themselves. Participants identified (1) choice and control, (2) communicating their way, and (3) safe environments as important and showed us how they wanted to be supported in each of these three areas. We also identified having autistic facilitators as an overarching strategy. These results provide a foundation for implementing change to enhance autonomy for autistic adults with intellectual disabilities. Lay Abstract Autistic young adults with intellectual disabilities want to be autonomous but are less autonomous than other people. However, they can be autonomous with appropriate support. We wanted to learn how we can support autistic adults with intellectual disabilities to be more autonomous. We designed our study with help from five autistic community partners to make sure the research was relevant to autistic people and would improve their lives. We talked with eight autistic young adults with intellectual disabilities about autonomy. We defined "talk" as verbal language, as well as non-verbal cues such as body language, facial expressions, vocalizations, and laughter. We did art projects and played games while we talked. We met in small groups over multiple sessions. Our participants told us that being autonomous meant being able to be themselves. They told us three main ways to support their autonomy: (1) having choice and control, (2) being able to communicate in their own way, and (3) being in a safe environment. Families, support staff, and caregivers can use this information to help autistic young adults with intellectual disabilities to be autonomous. En ligne : https://dx.doi.org/10.1177/13623613241254432 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=543

Blindness and Autism: Parents' Perspectives on Diagnostic Challenges, Support Needs and Support Provision / Kim DE VERDIER in Journal of Autism and Developmental Disorders, 50-6 (June 2020)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 50-6 (June 2020) . - p.1921-1930 Titre : Blindness and Autism: Parents' Perspectives on Diagnostic Challenges, Support Needs and Support Provision Type de document : texte imprimé Auteurs : Kim DE VERDIER, Auteur ; Elisabeth FERNELL, Auteur ; Ulla EK, Auteur Article en page(s) : p.1921-1930 Langues : Anglais (eng) Mots-clés : Assessments  Autism  Blindness  Children  Parents’ experiences  Support Index. décimale : PER Périodiques Résumé : Autism spectrum disorder (ASD), with or without intellectual disability (ID), is common in children with congenital blindness. This complex combination of disabilities often involves many challenges for the family. This study explored parents' experiences of having a child with blindness and ASD (with or without ID), their support needs and experiences of the support provided. Interviews with eight parents, representing six families, were performed. The parents emphasized that assessment and diagnostic procedures must be performed by professionals with expertise in blind children's development, and ASD. The support was often perceived as fragmented and did not correspond to the families' needs. The results suggest that national guidelines should be produced, to ensure a more coordinated and tailored support to these families. En ligne : http://dx.doi.org/10.1007/s10803-019-03944-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=425 [article] Blindness and Autism: Parents' Perspectives on Diagnostic Challenges, Support Needs and Support Provision [texte imprimé] / Kim DE VERDIER, Auteur ; Elisabeth FERNELL, Auteur ; Ulla EK, Auteur . - p.1921-1930. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 50-6 (June 2020) . - p.1921-1930 Mots-clés : Assessments  Autism  Blindness  Children  Parents’ experiences  Support Index. décimale : PER Périodiques Résumé : Autism spectrum disorder (ASD), with or without intellectual disability (ID), is common in children with congenital blindness. This complex combination of disabilities often involves many challenges for the family. This study explored parents' experiences of having a child with blindness and ASD (with or without ID), their support needs and experiences of the support provided. Interviews with eight parents, representing six families, were performed. The parents emphasized that assessment and diagnostic procedures must be performed by professionals with expertise in blind children's development, and ASD. The support was often perceived as fragmented and did not correspond to the families' needs. The results suggest that national guidelines should be produced, to ensure a more coordinated and tailored support to these families. En ligne : http://dx.doi.org/10.1007/s10803-019-03944-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=425

Brief Report: What Happens When I Can No Longer Support My Autistic Relative? Worries About the Future for Family Members of Autistic Adults / R. HERREMA in Journal of Autism and Developmental Disorders, 47-11 (November 2017)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 47-11 (November 2017) . - p.3659-3668 Titre : Brief Report: What Happens When I Can No Longer Support My Autistic Relative? Worries About the Future for Family Members of Autistic Adults Type de document : texte imprimé Auteurs : R. HERREMA, Auteur ; Deborah GARLAND, Auteur ; Malcolm OSBORNE, Auteur ; Mark FREESTON, Auteur ; Emma HONEY, Auteur ; Jacqui RODGERS, Auteur Article en page(s) : p.3659-3668 Langues : Anglais (eng) Mots-clés : Adults  Autism  Family members  Future  Support  Worry Index. décimale : PER Périodiques Résumé : Very little is known about autism and adulthood. Family members are often the primary support for autistic adults and frequently express concerns about what the future will hold and what support will be available for their relative. 120 family members of autistic adults completed an online survey exploring concerns about the future for their relative. The most endorsed concerns were "their needs won't be met" (77% worried weekly), "whether they will be happy" (72% worried weekly) and "who will care for them" (58% worried weekly). The results highlight the importance of implementing structured and timely support through collaboration with governmental policy, local commissioning and communication with charities to help prepare family members and their autistic relative for the future. En ligne : http://dx.doi.org/10.1007/s10803-017-3254-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=325 [article] Brief Report: What Happens When I Can No Longer Support My Autistic Relative? Worries About the Future for Family Members of Autistic Adults [texte imprimé] / R. HERREMA, Auteur ; Deborah GARLAND, Auteur ; Malcolm OSBORNE, Auteur ; Mark FREESTON, Auteur ; Emma HONEY, Auteur ; Jacqui RODGERS, Auteur . - p.3659-3668. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 47-11 (November 2017) . - p.3659-3668 Mots-clés : Adults  Autism  Family members  Future  Support  Worry Index. décimale : PER Périodiques Résumé : Very little is known about autism and adulthood. Family members are often the primary support for autistic adults and frequently express concerns about what the future will hold and what support will be available for their relative. 120 family members of autistic adults completed an online survey exploring concerns about the future for their relative. The most endorsed concerns were "their needs won't be met" (77% worried weekly), "whether they will be happy" (72% worried weekly) and "who will care for them" (58% worried weekly). The results highlight the importance of implementing structured and timely support through collaboration with governmental policy, local commissioning and communication with charities to help prepare family members and their autistic relative for the future. En ligne : http://dx.doi.org/10.1007/s10803-017-3254-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=325

Empowering through service: Creating a community of support for parents of black autistic individuals / Lauren B. QUETSCH ; Juan LEMUS in Research in Autism, 123 (May 2025)  

Permalink

‘I have more control over my life’: A qualitative exploration of challenges, opportunities, and support needs among autistic university students / Matthew SCOTT in Autism & Developmental Language Impairments, 6 (January-December 2021)  

Permalink

Information, Advocacy and Signposting as a Low-Level Support for Adults with High-Functioning Autism Spectrum Disorder: An Example from the UK / Kris SOUTHBY in Journal of Autism and Developmental Disorders, 48-2 (February 2018)  

Permalink

'People like me don't get support': Autistic adults' experiences of support and treatment for mental health difficulties, self-injury and suicidality / Louise CAMM-CROSBIE in Autism, 23-6 (August 2019)  

Permalink

'The dots just don't join up': Understanding the support needs of families of children on the autism spectrum / James GALPIN in Autism, 22-5 (July 2018)  

Permalink