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 et/ou numérique Auteurs : Catherine A BENT, Auteur ; Alexandra AULICH, Auteur ; Christos CONSTANTINE, Auteur ; Esther FIDOCK, Auteur ; Patrick DWYER, Auteur ; Cherie GREEN, Auteur ; Jodie SMITH, Auteur ; Ava N 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 J KENNEDY, Auteur ; Katherine E MACDUFFIE, Auteur ; Shoba S MEERA, Auteur ; Linda R WATSON, Auteur ; Andrew JO 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 et/ou numérique] / Catherine A BENT, Auteur ; Alexandra AULICH, Auteur ; Christos CONSTANTINE, Auteur ; Esther FIDOCK, Auteur ; Patrick DWYER, Auteur ; Cherie GREEN, Auteur ; Jodie SMITH, Auteur ; Ava N 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 J KENNEDY, Auteur ; Katherine E MACDUFFIE, Auteur ; Shoba S MEERA, Auteur ; Linda R WATSON, Auteur ; Andrew JO 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

Change in Autism Diagnoses Prior to and Following the Introduction of DSM-5 / Catherine A BENT in Journal of Autism and Developmental Disorders, 47-1 (January 2017)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 47-1 (January 2017) . - p.163-171 Titre : Change in Autism Diagnoses Prior to and Following the Introduction of DSM-5 Type de document : Texte imprimé et/ou numérique Auteurs : Catherine A BENT, Auteur ; Josephine BARBARO, Auteur ; Cheryl DISSANAYAKE, Auteur Article en page(s) : p.163-171 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Asperger’s disorder  DSM-5  Diagnosis  Incidence  Age of diagnosis Index. décimale : PER Périodiques Résumé : Change over time in the age and number of children registered for autism-specific funding was examined, prior to and following introduction of the revised diagnostic criteria (the Diagnostic and Statistical Manual of Mental Disorders—fifth edition; DSM-5). De-identified data for 32,199 children aged under 7 years between 2010 and 2015 was utilised. Fluctuations were evident in the frequency and age of diagnoses, with slight increases in age of diagnosis corresponding with increases in frequency of diagnoses. The incidence of autism increased from 2010 to 2013, and then plateaued to 2015. A significant trend-relative reduction in the number of children registered to receive autism-specific funding was evident post 2013, suggesting the more stringent DSM-5 criteria may have curbed the trend of increasing diagnoses over time. En ligne : http://dx.doi.org/10.1007/s10803-016-2942-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=298 [article] Change in Autism Diagnoses Prior to and Following the Introduction of DSM-5 [Texte imprimé et/ou numérique] / Catherine A BENT, Auteur ; Josephine BARBARO, Auteur ; Cheryl DISSANAYAKE, Auteur . - p.163-171. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 47-1 (January 2017) . - p.163-171 Mots-clés : Autism spectrum disorder  Asperger’s disorder  DSM-5  Diagnosis  Incidence  Age of diagnosis Index. décimale : PER Périodiques Résumé : Change over time in the age and number of children registered for autism-specific funding was examined, prior to and following introduction of the revised diagnostic criteria (the Diagnostic and Statistical Manual of Mental Disorders—fifth edition; DSM-5). De-identified data for 32,199 children aged under 7 years between 2010 and 2015 was utilised. Fluctuations were evident in the frequency and age of diagnoses, with slight increases in age of diagnosis corresponding with increases in frequency of diagnoses. The incidence of autism increased from 2010 to 2013, and then plateaued to 2015. A significant trend-relative reduction in the number of children registered to receive autism-specific funding was evident post 2013, suggesting the more stringent DSM-5 criteria may have curbed the trend of increasing diagnoses over time. En ligne : http://dx.doi.org/10.1007/s10803-016-2942-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=298

Comparison of mental health, well-being and parenting sense of competency among Australian and South-East Asian parents of autistic children accessing early intervention in Australia / J. SMITH in Autism, 25-6 (August 2021)  

Public ISBD [article]  inAutism > 25-6 (August 2021) . - p.1784-1796 Titre : Comparison of mental health, well-being and parenting sense of competency among Australian and South-East Asian parents of autistic children accessing early intervention in Australia Type de document : Texte imprimé et/ou numérique Auteurs : J. SMITH, Auteur ; R. SULEK, Auteur ; Ifrah ABDULLAHI, Auteur ; C. C. GREEN, Auteur ; Catherine A BENT, Auteur ; Cheryl DISSANAYAKE, Auteur ; K. HUDRY, Auteur Article en page(s) : p.1784-1796 Langues : Anglais (eng) Mots-clés : Australia  Autism Spectrum Disorder  Autistic Disorder  Child  Humans  Mental Health  Parenting  Parents  Quality of Life  culture  mental health  parenting  well-being Index. décimale : PER Périodiques Résumé : We know that parents of autistic children experience poorer mental health and lower well-being than parents of non-autistic children. We also know that poorer mental health among parents of autistic children has been observed across different cultures. Most research focuses on Western cultures, so we know little about parental mental health and well-being of parents from different cultural backgrounds; yet, it is likely that cultural background contributes to how parents view their child's condition and respond to the diagnosis. Here, we compared mental health, quality of life and well-being between families raising an autistic child from Australian backgrounds to families from South-East Asian backgrounds. All children in the current study were receiving the same community-based early intervention. When compared to the general population, parents had poorer mental health overall, but there were no differences between the two groups of parents. However, parents from South-East Asian backgrounds reported higher well-being and fewer difficulties associated with their child's autism. These findings suggest that cultural background likely influences not only parent's view of, and response to, their child's autism, but also their own sense of well-being. As researchers and clinicians working with families of autistic children, we should more explicitly consider family's cultural background within our work. En ligne : http://dx.doi.org/10.1177/13623613211010006 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451 [article] Comparison of mental health, well-being and parenting sense of competency among Australian and South-East Asian parents of autistic children accessing early intervention in Australia [Texte imprimé et/ou numérique] / J. SMITH, Auteur ; R. SULEK, Auteur ; Ifrah ABDULLAHI, Auteur ; C. C. GREEN, Auteur ; Catherine A BENT, Auteur ; Cheryl DISSANAYAKE, Auteur ; K. HUDRY, Auteur . - p.1784-1796. Langues : Anglais (eng) in Autism > 25-6 (August 2021) . - p.1784-1796 Mots-clés : Australia  Autism Spectrum Disorder  Autistic Disorder  Child  Humans  Mental Health  Parenting  Parents  Quality of Life  culture  mental health  parenting  well-being Index. décimale : PER Périodiques Résumé : We know that parents of autistic children experience poorer mental health and lower well-being than parents of non-autistic children. We also know that poorer mental health among parents of autistic children has been observed across different cultures. Most research focuses on Western cultures, so we know little about parental mental health and well-being of parents from different cultural backgrounds; yet, it is likely that cultural background contributes to how parents view their child's condition and respond to the diagnosis. Here, we compared mental health, quality of life and well-being between families raising an autistic child from Australian backgrounds to families from South-East Asian backgrounds. All children in the current study were receiving the same community-based early intervention. When compared to the general population, parents had poorer mental health overall, but there were no differences between the two groups of parents. However, parents from South-East Asian backgrounds reported higher well-being and fewer difficulties associated with their child's autism. These findings suggest that cultural background likely influences not only parent's view of, and response to, their child's autism, but also their own sense of well-being. As researchers and clinicians working with families of autistic children, we should more explicitly consider family's cultural background within our work. En ligne : http://dx.doi.org/10.1177/13623613211010006 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451

Differential predictors of well-being versus mental health among parents of pre-schoolers with autism / Cherie C. GREEN in Autism, 25-4 (May 2021)  

Public ISBD [article]  inAutism > 25-4 (May 2021) . - p.1125-1136 Titre : Differential predictors of well-being versus mental health among parents of pre-schoolers with autism Type de document : Texte imprimé et/ou numérique Auteurs : Cherie C. GREEN, Auteur ; Jodie SMITH, Auteur ; Catherine A BENT, Auteur ; Lacey CHETCUTI, Auteur ; Rhylee SULEK, Auteur ; Mirko ULJAREVIC, Auteur ; Kristelle HUDRY, Auteur Article en page(s) : p.1125-1136 Langues : Anglais (eng) Mots-clés : autism severity  mental health  mindfulness  parents  personality  well-being  young children Index. décimale : PER Périodiques Résumé : Raising a child with autism has been linked to mental health difficulties. Poor parental mental health is likely influenced by various factors - including child-, parent-, and family/socioeconomic characteristics. However, little is known about what influences and promotes well-being (as opposed to mental health) among parents of young, newly diagnosed autistic children who may be particularly vulnerable. We examined child-, parent-, and family/socioeconomic factors associated with each of mental health and well-being in a sample of 136 parents of pre-school-aged children. Parental mental health was linked to both child- (i.e. autism symptom severity) and parent-related factors (i.e. personality traits reflecting a tendency to experience negative emotions). By contrast, in additional to mental health difficulties, which were linked to well-being, only other parent-related characteristics (and not child characteristics) were related to well-being. These included personality traits reflecting a tendency to be more extraverted/sociable, and also mindfulness. Other child-related and family/socioeconomic context factors (including household income, parental education level) were not linked to parental mental health or well-being in this sample. These results support the idea that poorer mental health and well-being are not simply the opposite of one another. That is, while these two factors were related, they were linked to different personal characteristics. Perhaps most importantly, the link between well-being and mindfulness - a personal characteristic that parents can improve - suggests mindfulness-based interventions may be helpful in directly supporting parental well-being in the context of raising a young child with autism. En ligne : http://dx.doi.org/10.1177/1362361320984315 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444 [article] Differential predictors of well-being versus mental health among parents of pre-schoolers with autism [Texte imprimé et/ou numérique] / Cherie C. GREEN, Auteur ; Jodie SMITH, Auteur ; Catherine A BENT, Auteur ; Lacey CHETCUTI, Auteur ; Rhylee SULEK, Auteur ; Mirko ULJAREVIC, Auteur ; Kristelle HUDRY, Auteur . - p.1125-1136. Langues : Anglais (eng) in Autism > 25-4 (May 2021) . - p.1125-1136 Mots-clés : autism severity  mental health  mindfulness  parents  personality  well-being  young children Index. décimale : PER Périodiques Résumé : Raising a child with autism has been linked to mental health difficulties. Poor parental mental health is likely influenced by various factors - including child-, parent-, and family/socioeconomic characteristics. However, little is known about what influences and promotes well-being (as opposed to mental health) among parents of young, newly diagnosed autistic children who may be particularly vulnerable. We examined child-, parent-, and family/socioeconomic factors associated with each of mental health and well-being in a sample of 136 parents of pre-school-aged children. Parental mental health was linked to both child- (i.e. autism symptom severity) and parent-related factors (i.e. personality traits reflecting a tendency to experience negative emotions). By contrast, in additional to mental health difficulties, which were linked to well-being, only other parent-related characteristics (and not child characteristics) were related to well-being. These included personality traits reflecting a tendency to be more extraverted/sociable, and also mindfulness. Other child-related and family/socioeconomic context factors (including household income, parental education level) were not linked to parental mental health or well-being in this sample. These results support the idea that poorer mental health and well-being are not simply the opposite of one another. That is, while these two factors were related, they were linked to different personal characteristics. Perhaps most importantly, the link between well-being and mindfulness - a personal characteristic that parents can improve - suggests mindfulness-based interventions may be helpful in directly supporting parental well-being in the context of raising a young child with autism. En ligne : http://dx.doi.org/10.1177/1362361320984315 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444

Non-native language proficiency may influence the responsiveness of bilingual parents towards young children with autism: A short report / Jodie SMITH in Autism & Developmental Language Impairments, 5 (January-December 2020)  

Public ISBD [article]  inAutism & Developmental Language Impairments > 5 (January-December 2020) Titre : Non-native language proficiency may influence the responsiveness of bilingual parents towards young children with autism: A short report Type de document : Texte imprimé et/ou numérique Auteurs : Jodie SMITH, Auteur ; Catherine A BENT, Auteur ; Cherie C. GREEN, Auteur ; Alexandra WOOLLACOTT, Auteur ; Kristelle HUDRY, Auteur Langues : Anglais (eng) Mots-clés : Bilingualism  autism spectrum disorders  parents  interaction Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1177/2396941519899684 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=438 [article] Non-native language proficiency may influence the responsiveness of bilingual parents towards young children with autism: A short report [Texte imprimé et/ou numérique] / Jodie SMITH, Auteur ; Catherine A BENT, Auteur ; Cherie C. GREEN, Auteur ; Alexandra WOOLLACOTT, Auteur ; Kristelle HUDRY, Auteur. Langues : Anglais (eng) in Autism & Developmental Language Impairments > 5 (January-December 2020) Mots-clés : Bilingualism  autism spectrum disorders  parents  interaction Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1177/2396941519899684 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=438

Outcomes of children receiving Group-Early Start Denver Model in an inclusive versus autism-specific setting: A pilot randomized controlled trial / G. VIVANTI in Autism, 23-5 (July 2019)  

Permalink

---

1 (1 - 6 / 6)