Caregiver perspectives on the impact of uncertainty on the everyday lives of autistic children and their families / Jane GOODWIN in Autism, 26-4 (May 2022)  

Public ISBD [article]  inAutism > 26-4 (May 2022) . - p.827-838 Titre : Caregiver perspectives on the impact of uncertainty on the everyday lives of autistic children and their families Type de document : texte imprimé Auteurs : Jane GOODWIN, Auteur ; Priyanka ROB, Auteur ; Mark FREESTON, Auteur ; Deborah GARLAND, Auteur ; Victoria GRAHAME, Auteur ; Ashleigh KERNOHAN, Auteur ; Marie LABUS, Auteur ; Malcolm OSBORNE, Auteur ; Jeremy R. PARR, Auteur ; Catharine WRIGHT, Auteur ; Jacqui RODGERS, Auteur Article en page(s) : p.827-838 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder  Autistic Disorder  Caregivers  Child  Humans  Parents  Quality of Life  Uncertainty  anxiety  intolerance of uncertainty  potential conflicts of interest with respect to the research, authorship and/or  publication of this article: Professor J.R., Dr C.W. and Professor M.F. developed  the Coping with Uncertainty in Everyday Situations (CUES(©)) Programme. Data  presented in this article were collected as part of a CUES(©) feasibility and  acceptability study. Professor M.F. declares receiving royalties for books and  honoraria for training in related areas addressing anxiety in neurotypical  populations. Index. décimale : PER Périodiques Résumé : Anxiety is common in autistic children. Research shows that this may be related to intolerance of uncertainty, which is a tendency to react negatively to uncertain situations. Understanding when, why and how autistic children respond to uncertainty is important in the development of anxiety programmes. We asked 53 (including 3 dyads) parents of autistic children about the types of uncertain situations that cause difficulties for their child and how uncertainty impacts on daily life for them and their families. We found that uncertain situations made autistic children and their families feel sad, worried, frustrated and angry through the themes: child's reactions to uncertainty, trying to reduce uncertainty, the impact of difficulties with uncertainty, the impact of uncertainty on parenting and the impact on parents. There are lots of situations that are anxiety provoking for autistic children because of uncertainty, such as school. Programmes to reduce anxiety and increase autistic children's ability to cope with everyday uncertain situations could improve quality of life for autistic children and their families. En ligne : https://dx.doi.org/10.1177/13623613211033757 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473 [article] Caregiver perspectives on the impact of uncertainty on the everyday lives of autistic children and their families [texte imprimé] / Jane GOODWIN, Auteur ; Priyanka ROB, Auteur ; Mark FREESTON, Auteur ; Deborah GARLAND, Auteur ; Victoria GRAHAME, Auteur ; Ashleigh KERNOHAN, Auteur ; Marie LABUS, Auteur ; Malcolm OSBORNE, Auteur ; Jeremy R. PARR, Auteur ; Catharine WRIGHT, Auteur ; Jacqui RODGERS, Auteur . - p.827-838. Langues : Anglais (eng) in Autism > 26-4 (May 2022) . - p.827-838 Mots-clés : Autism Spectrum Disorder  Autistic Disorder  Caregivers  Child  Humans  Parents  Quality of Life  Uncertainty  anxiety  intolerance of uncertainty  potential conflicts of interest with respect to the research, authorship and/or  publication of this article: Professor J.R., Dr C.W. and Professor M.F. developed  the Coping with Uncertainty in Everyday Situations (CUES(©)) Programme. Data  presented in this article were collected as part of a CUES(©) feasibility and  acceptability study. Professor M.F. declares receiving royalties for books and  honoraria for training in related areas addressing anxiety in neurotypical  populations. Index. décimale : PER Périodiques Résumé : Anxiety is common in autistic children. Research shows that this may be related to intolerance of uncertainty, which is a tendency to react negatively to uncertain situations. Understanding when, why and how autistic children respond to uncertainty is important in the development of anxiety programmes. We asked 53 (including 3 dyads) parents of autistic children about the types of uncertain situations that cause difficulties for their child and how uncertainty impacts on daily life for them and their families. We found that uncertain situations made autistic children and their families feel sad, worried, frustrated and angry through the themes: child's reactions to uncertainty, trying to reduce uncertainty, the impact of difficulties with uncertainty, the impact of uncertainty on parenting and the impact on parents. There are lots of situations that are anxiety provoking for autistic children because of uncertainty, such as school. Programmes to reduce anxiety and increase autistic children's ability to cope with everyday uncertain situations could improve quality of life for autistic children and their families. En ligne : https://dx.doi.org/10.1177/13623613211033757 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473

Coping with uncertainty in everyday situations (CUES©) to address intolerance of uncertainty in autistic children: an intervention feasibility trial / Jacqui RODGERS in Journal of Autism and Developmental Disorders, 53-9 (September 2023)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 53-9 (September 2023) . - p.3460-3474 Titre : Coping with uncertainty in everyday situations (CUES©) to address intolerance of uncertainty in autistic children: an intervention feasibility trial Type de document : texte imprimé Auteurs : Jacqui RODGERS, Auteur ; Jane GOODWIN, Auteur ; Deborah GARLAND, Auteur ; Victoria GRAHAME, Auteur ; Lucy ISARD, Auteur ; Ashleigh KERNOHAN, Auteur ; Marie LABUS, Auteur ; Malcolm OSBORNE, Auteur ; Jeremy R. PARR, Auteur ; Priyanka ROB, Auteur ; Catharine WRIGHT, Auteur ; Mark FREESTON, Auteur Article en page(s) : p.3460-3474 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Anxiety related to uncertainty is common in autism. Coping with Uncertainty in Everyday Situations (CUES©) is a parent-mediated group intervention aiming to increase autistic children s tolerance to uncertain situations. A pilot study was conducted to test its feasibility and acceptability. En ligne : https://doi.org/10.1007/s10803-022-05645-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=511 [article] Coping with uncertainty in everyday situations (CUES©) to address intolerance of uncertainty in autistic children: an intervention feasibility trial [texte imprimé] / Jacqui RODGERS, Auteur ; Jane GOODWIN, Auteur ; Deborah GARLAND, Auteur ; Victoria GRAHAME, Auteur ; Lucy ISARD, Auteur ; Ashleigh KERNOHAN, Auteur ; Marie LABUS, Auteur ; Malcolm OSBORNE, Auteur ; Jeremy R. PARR, Auteur ; Priyanka ROB, Auteur ; Catharine WRIGHT, Auteur ; Mark FREESTON, Auteur . - p.3460-3474. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 53-9 (September 2023) . - p.3460-3474 Index. décimale : PER Périodiques Résumé : Anxiety related to uncertainty is common in autism. Coping with Uncertainty in Everyday Situations (CUES©) is a parent-mediated group intervention aiming to increase autistic children s tolerance to uncertain situations. A pilot study was conducted to test its feasibility and acceptability. En ligne : https://doi.org/10.1007/s10803-022-05645-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=511

A survey of professionals’ experiences of using the Autism Clinical Interview for Adults (ACIA) in diagnostic practice / Jane GOODWIN in Research in Autism, 132 (April 2026)  

Public ISBD [article]  inResearch in Autism > 132 (April 2026) . - 202804 Titre : A survey of professionals’ experiences of using the Autism Clinical Interview for Adults (ACIA) in diagnostic practice Type de document : texte imprimé Auteurs : Jane GOODWIN, Auteur ; Sarah WIGHAM, Auteur ; Barry INGHAM, Auteur ; Ruby HERRINGTON, Auteur ; Ann Le COUTEUR, Auteur ; Jeremy R. PARR, Auteur Article en page(s) : 202804 Langues : Anglais (eng) Mots-clés : Adult  Autism  Diagnosis  Interview  Assessment  Professionals Résumé : Purpose We aimed to investigate how the Autism Clinical Interview for Adults (ACIA) is being used in clinical practice and multi-disciplinary team (MDT) professionals’ views on clinical utility. Methods 1092 professionals trained in the ACIA from the UK and internationally were contacted via email to complete an online questionnaire focused on current ACIA use, implementation, clinical utility, and views about training. Descriptive statistics and chi-square analysis were used to analyse quantitative data. For open text responses, Framework Analysis was used. Results 337 professionals consented and completed the questionnaire. Of these, 257 answered all the questions (76 % from the UK). 232 professionals reported they had used the ACIA materials and 97 % found it helpful in enabling a decision about whether people do or do not meet criteria for autism. 92 % found the ACIA useful when giving feedback to the person being assessed. 89 % found the ACIA useful when writing reports. Professionals reported that 89 % of people having an autism assessment found the ACIA acceptable and useful. Following training and ACIA use, professionals in privately funded services reported improved skills in assessing possible autism in adults compared to those in publicly funded diagnostic services. Conclusions Most professionals who responded to the survey use the ACIA, and reported that the interviews are useful and acceptable for the assessment of autism in adulthood. Face validity and clinical utility in clinical practice was demonstrated. This interview and accessibility of training address an autism community research priority. En ligne : https://doi.org/10.1016/j.reia.2026.202804 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=583 [article] A survey of professionals’ experiences of using the Autism Clinical Interview for Adults (ACIA) in diagnostic practice [texte imprimé] / Jane GOODWIN, Auteur ; Sarah WIGHAM, Auteur ; Barry INGHAM, Auteur ; Ruby HERRINGTON, Auteur ; Ann Le COUTEUR, Auteur ; Jeremy R. PARR, Auteur . - 202804. Langues : Anglais (eng) in Research in Autism > 132 (April 2026) . - 202804 Mots-clés : Adult  Autism  Diagnosis  Interview  Assessment  Professionals Résumé : Purpose We aimed to investigate how the Autism Clinical Interview for Adults (ACIA) is being used in clinical practice and multi-disciplinary team (MDT) professionals’ views on clinical utility. Methods 1092 professionals trained in the ACIA from the UK and internationally were contacted via email to complete an online questionnaire focused on current ACIA use, implementation, clinical utility, and views about training. Descriptive statistics and chi-square analysis were used to analyse quantitative data. For open text responses, Framework Analysis was used. Results 337 professionals consented and completed the questionnaire. Of these, 257 answered all the questions (76 % from the UK). 232 professionals reported they had used the ACIA materials and 97 % found it helpful in enabling a decision about whether people do or do not meet criteria for autism. 92 % found the ACIA useful when giving feedback to the person being assessed. 89 % found the ACIA useful when writing reports. Professionals reported that 89 % of people having an autism assessment found the ACIA acceptable and useful. Following training and ACIA use, professionals in privately funded services reported improved skills in assessing possible autism in adults compared to those in publicly funded diagnostic services. Conclusions Most professionals who responded to the survey use the ACIA, and reported that the interviews are useful and acceptable for the assessment of autism in adulthood. Face validity and clinical utility in clinical practice was demonstrated. This interview and accessibility of training address an autism community research priority. En ligne : https://doi.org/10.1016/j.reia.2026.202804 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=583

Understanding Repetitive Behaviours: A clinical and cost-effectiveness, multi-site randomised controlled trial of a group for parents and carers of young autistic children / Victoria GRAHAME in Autism, 29-8 (August 2025)  

Public ISBD [article]  inAutism > 29-8 (August 2025) . - p.1998-2015 Titre : Understanding Repetitive Behaviours: A clinical and cost-effectiveness, multi-site randomised controlled trial of a group for parents and carers of young autistic children Type de document : texte imprimé Auteurs : Victoria GRAHAME, Auteur ; Ashleigh KERNOHAN, Auteur ; Ehsan KHARATI, Auteur ; Ayesha MATHIAS, Auteur ; Chrissie BUTCHER, Auteur ; Linda DIXON, Auteur ; Sue FLETCHER-WATSON, Auteur ; Deborah GARLAND, Auteur ; Magdalena GLOD, Auteur ; Jane GOODWIN, Auteur ; Saoirse HERON, Auteur ; Emma HONEY, Auteur ; Ann LE COUTEUR, Auteur ; Leila MACKIE, Auteur ; Jessica MAXWELL, Auteur ; Lewis MONTGOMERY, Auteur ; Emmanuel OGUNDIMU, Auteur ; Helen PROBERT, Auteur ; Deborah M. RIBY, Auteur ; Priyanka ROB, Auteur ; Leanne ROGAN, Auteur ; Laura TAVERNOR, Auteur ; Luke VALE, Auteur ; Elspeth Imogen WEBB, Auteur ; Christopher WEETMAN, Auteur ; Jacqui RODGERS, Auteur Article en page(s) : p.1998-2015 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  interventions - psychosocial/behavioural  pre-school children  school-age children Index. décimale : PER Périodiques Résumé : Restricted and repetitive behaviours vary greatly between autistic people. Some are a source of pleasure or create opportunities for learning; others may be detrimental in day-to-day life or cause harm. We have developed, in close collaboration with parents/carers, the Understanding Repetitive Behaviours programme, designed for families of young autistic children, to help them recognise, understand and respond sensitively to their child?s impactful restricted and repetitive behaviours. This study is a clinical and cost-effectiveness, multi-site randomised controlled trial of the Understanding Repetitive Behaviours parent programme versus a psychoeducation programme (equivalent to current best practice), learning about autism. Participants were parents/carers, with an autistic child aged between 3-9 years and 11 months. The study was delivered across three sites in England and Scotland. Analyses were completed using intention-to-treat principles. Two hundred and twenty seven families were randomised (113 in LAA; 114 in Understanding Repetitive Behaviours arm). No differences were found between the arms on the primary outcome measure (The Clinical Global Impression - Improvement scale). Analysis of secondary outcomes indicated that children in the Understanding Repetitive Behaviours arm were more likely to be rated as responders in target impactful restricted and repetitive behaviours at 24 weeks but that this effect was not maintained at 52 weeks. Improvements in parent and family functioning were apparent, with no evidence of differences between the arms. The study reconfirms that it is important that clinicians consider both restricted and repetitive behaviours and social communication needs of autistic children with parents when planning appropriate support.Lay abstract Autistic children, frequently repeat the same behaviours over and over, have specific interests or like things to stay the same. These behaviours and interests are often fun and helpful. However, sometimes they can impact negatively on day-to-day life or put the child at risk of harm. Working closely with parents of autistic children, we developed an 8-week programme (Understanding Repetitive Behaviours) to help them recognise and understand these behaviours. This study aimed to find out whether the understanding repetitive behaviour programme was helpful and good value for money. Two hundred and twenty seven families were allocated by chance to receive either Understanding Repetitive Behaviours or a learning about autism programme. When experts made judgements about whether children showed positive changes across various measures, and these were analysed, there were no differences between the programmes. However, parents who attended the Understanding Repetitive Behaviours programme reported improvement in one of their child?s specific repetitive behaviour (selected to be the main focus of the Understanding Repetitive Behaviours programme) at 24 weeks after the end of the programme. Parents who attended either programme reported more confidence, greater wellbeing and less stress up to 1 year after the end of the study. En ligne : https://journals.sagepub.com/doi/abs/10.1177/13623613251333175 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=564 [article] Understanding Repetitive Behaviours: A clinical and cost-effectiveness, multi-site randomised controlled trial of a group for parents and carers of young autistic children [texte imprimé] / Victoria GRAHAME, Auteur ; Ashleigh KERNOHAN, Auteur ; Ehsan KHARATI, Auteur ; Ayesha MATHIAS, Auteur ; Chrissie BUTCHER, Auteur ; Linda DIXON, Auteur ; Sue FLETCHER-WATSON, Auteur ; Deborah GARLAND, Auteur ; Magdalena GLOD, Auteur ; Jane GOODWIN, Auteur ; Saoirse HERON, Auteur ; Emma HONEY, Auteur ; Ann LE COUTEUR, Auteur ; Leila MACKIE, Auteur ; Jessica MAXWELL, Auteur ; Lewis MONTGOMERY, Auteur ; Emmanuel OGUNDIMU, Auteur ; Helen PROBERT, Auteur ; Deborah M. RIBY, Auteur ; Priyanka ROB, Auteur ; Leanne ROGAN, Auteur ; Laura TAVERNOR, Auteur ; Luke VALE, Auteur ; Elspeth Imogen WEBB, Auteur ; Christopher WEETMAN, Auteur ; Jacqui RODGERS, Auteur . - p.1998-2015. Langues : Anglais (eng) in Autism > 29-8 (August 2025) . - p.1998-2015 Mots-clés : autism spectrum disorders  interventions - psychosocial/behavioural  pre-school children  school-age children Index. décimale : PER Périodiques Résumé : Restricted and repetitive behaviours vary greatly between autistic people. Some are a source of pleasure or create opportunities for learning; others may be detrimental in day-to-day life or cause harm. We have developed, in close collaboration with parents/carers, the Understanding Repetitive Behaviours programme, designed for families of young autistic children, to help them recognise, understand and respond sensitively to their child?s impactful restricted and repetitive behaviours. This study is a clinical and cost-effectiveness, multi-site randomised controlled trial of the Understanding Repetitive Behaviours parent programme versus a psychoeducation programme (equivalent to current best practice), learning about autism. Participants were parents/carers, with an autistic child aged between 3-9 years and 11 months. The study was delivered across three sites in England and Scotland. Analyses were completed using intention-to-treat principles. Two hundred and twenty seven families were randomised (113 in LAA; 114 in Understanding Repetitive Behaviours arm). No differences were found between the arms on the primary outcome measure (The Clinical Global Impression - Improvement scale). Analysis of secondary outcomes indicated that children in the Understanding Repetitive Behaviours arm were more likely to be rated as responders in target impactful restricted and repetitive behaviours at 24 weeks but that this effect was not maintained at 52 weeks. Improvements in parent and family functioning were apparent, with no evidence of differences between the arms. The study reconfirms that it is important that clinicians consider both restricted and repetitive behaviours and social communication needs of autistic children with parents when planning appropriate support.Lay abstract Autistic children, frequently repeat the same behaviours over and over, have specific interests or like things to stay the same. These behaviours and interests are often fun and helpful. However, sometimes they can impact negatively on day-to-day life or put the child at risk of harm. Working closely with parents of autistic children, we developed an 8-week programme (Understanding Repetitive Behaviours) to help them recognise and understand these behaviours. This study aimed to find out whether the understanding repetitive behaviour programme was helpful and good value for money. Two hundred and twenty seven families were allocated by chance to receive either Understanding Repetitive Behaviours or a learning about autism programme. When experts made judgements about whether children showed positive changes across various measures, and these were analysed, there were no differences between the programmes. However, parents who attended the Understanding Repetitive Behaviours programme reported improvement in one of their child?s specific repetitive behaviour (selected to be the main focus of the Understanding Repetitive Behaviours programme) at 24 weeks after the end of the programme. Parents who attended either programme reported more confidence, greater wellbeing and less stress up to 1 year after the end of the study. En ligne : https://journals.sagepub.com/doi/abs/10.1177/13623613251333175 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=564

---

1 (1 - 4 / 4) Par page : 25 50 100 200