Adapting and pre-testing the World Health Organization's Caregiver Skills Training programme for autism and other developmental disorders in a very low-resource setting: Findings from Ethiopia / Bethlehem TEKOLA in Autism, 24-1 (January 2020)  

Public ISBD [article]  inAutism > 24-1 (January 2020) . - p.51-63 Titre : Adapting and pre-testing the World Health Organization's Caregiver Skills Training programme for autism and other developmental disorders in a very low-resource setting: Findings from Ethiopia Type de document : texte imprimé Auteurs : Bethlehem TEKOLA, Auteur ; Fikirte GIRMA, Auteur ; Mersha KINFE, Auteur ; Rehana ABDURAHMAN, Auteur ; Markos TESFAYE, Auteur ; Zemi YENUS, Auteur ; Erica SALOMONE, Auteur ; Laura PACIONE, Auteur ; Abebaw FEKADU, Auteur ; Chiara SERVILI, Auteur ; Charlotte HANLON, Auteur ; Rosa A. HOEKSTRA, Auteur Article en page(s) : p.51-63 Langues : Anglais (eng) Mots-clés : Ethiopia  caregivers  developmental delay  developmental disorders  parent-mediated  parenting skills programme  qualitative Index. décimale : PER Périodiques Résumé : The World Health Organization's Caregiver Skills Training programme for children with developmental disorders or delays teaches caregivers strategies to help them support their child's development. Ethiopia has a severe lack of services for children with developmental disorders or delays. This study explored the perspectives of Ethiopian caregivers, professionals and other stakeholders to inform adaptation and implementation of the World Health Organization's Caregiver Skills Training in Ethiopia. Data collection included (1) a consultation and review, comprising stakeholder meetings, review of draft Caregiver Skills Training materials and feedback from Ethiopian Master Trainees and (2) a pre-pilot including quantitative feasibility and acceptability measures and qualitative interviews with caregivers (n = 9) and programme facilitators/observers (n = 5). The consultation participants indicated that the Caregiver Skills Training addresses an urgent need and is relevant to the Ethiopian context. Several adaptations were proposed, including more emphasis on psycho-education, stigma, parental feelings of guilt and expectations of a cure. The adapted Caregiver Skills Training was pre-piloted with excellent participation (100%) and retention (90%) rates. Four themes were developed from the qualitative data: (1) Programme acceptability and relevance, (2) Perceived programme benefits, (3) Challenges and barriers and (4) Suggestions for improvement. The World Health Organization's Caregiver Skills Training addresses a local need and, with careful adaptations, is feasible and acceptable to be implemented in Ethiopia. These findings may have relevance to low-resource settings worldwide. En ligne : http://dx.doi.org/10.1177/1362361319848532 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=414 [article] Adapting and pre-testing the World Health Organization's Caregiver Skills Training programme for autism and other developmental disorders in a very low-resource setting: Findings from Ethiopia [texte imprimé] / Bethlehem TEKOLA, Auteur ; Fikirte GIRMA, Auteur ; Mersha KINFE, Auteur ; Rehana ABDURAHMAN, Auteur ; Markos TESFAYE, Auteur ; Zemi YENUS, Auteur ; Erica SALOMONE, Auteur ; Laura PACIONE, Auteur ; Abebaw FEKADU, Auteur ; Chiara SERVILI, Auteur ; Charlotte HANLON, Auteur ; Rosa A. HOEKSTRA, Auteur . - p.51-63. Langues : Anglais (eng) in Autism > 24-1 (January 2020) . - p.51-63 Mots-clés : Ethiopia  caregivers  developmental delay  developmental disorders  parent-mediated  parenting skills programme  qualitative Index. décimale : PER Périodiques Résumé : The World Health Organization's Caregiver Skills Training programme for children with developmental disorders or delays teaches caregivers strategies to help them support their child's development. Ethiopia has a severe lack of services for children with developmental disorders or delays. This study explored the perspectives of Ethiopian caregivers, professionals and other stakeholders to inform adaptation and implementation of the World Health Organization's Caregiver Skills Training in Ethiopia. Data collection included (1) a consultation and review, comprising stakeholder meetings, review of draft Caregiver Skills Training materials and feedback from Ethiopian Master Trainees and (2) a pre-pilot including quantitative feasibility and acceptability measures and qualitative interviews with caregivers (n = 9) and programme facilitators/observers (n = 5). The consultation participants indicated that the Caregiver Skills Training addresses an urgent need and is relevant to the Ethiopian context. Several adaptations were proposed, including more emphasis on psycho-education, stigma, parental feelings of guilt and expectations of a cure. The adapted Caregiver Skills Training was pre-piloted with excellent participation (100%) and retention (90%) rates. Four themes were developed from the qualitative data: (1) Programme acceptability and relevance, (2) Perceived programme benefits, (3) Challenges and barriers and (4) Suggestions for improvement. The World Health Organization's Caregiver Skills Training addresses a local need and, with careful adaptations, is feasible and acceptable to be implemented in Ethiopia. These findings may have relevance to low-resource settings worldwide. En ligne : http://dx.doi.org/10.1177/1362361319848532 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=414

Are Autism Spectrum Conditions More Prevalent in an Information-Technology Region? A School-Based Study of Three Regions in the Netherlands / Martine T. ROELFSEMA in Journal of Autism and Developmental Disorders, 42-5 (May 2012)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 42-5 (May 2012) . - p.734-739 Titre : Are Autism Spectrum Conditions More Prevalent in an Information-Technology Region? A School-Based Study of Three Regions in the Netherlands Type de document : texte imprimé Auteurs : Martine T. ROELFSEMA, Auteur ; Rosa A. HOEKSTRA, Auteur ; Carrie ALLISON, Auteur ; Sally WHEELWRIGHT, Auteur ; Carol BRAYNE, Auteur ; Fiona E. MATTHEWS, Auteur ; Simon BARON-COHEN, Auteur Année de publication : 2012 Article en page(s) : p.734-739 Langues : Anglais (eng) Mots-clés : Autism spectrum conditions  Prevalence  Regional differences  Hyper-systemizing theory Index. décimale : PER Périodiques Résumé : We tested for differences in the prevalence of autism spectrum conditions (ASC) in school-aged children in three geographical regions in the Netherlands. Schools were asked to provide the number of children enrolled, the number having a clinical diagnosis of ASC and/or two control neurodevelopmental conditions. Prevalence was evaluated by negative binomial regression and adjustments were made for non-response and size of the schools. The prevalence estimates of ASC in Eindhoven was 229 per 10,000, significantly higher than in Haarlem (84 per 10,000) and Utrecht (57 per 10,000), whilst the prevalence for the control conditions were similar in all regions. Phase two is planned to validate school-reported cases using standardized diagnostic methods and to explore the possible causes for these differences. En ligne : http://dx.doi.org/10.1007/s10803-011-1302-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=154 [article] Are Autism Spectrum Conditions More Prevalent in an Information-Technology Region? A School-Based Study of Three Regions in the Netherlands [texte imprimé] / Martine T. ROELFSEMA, Auteur ; Rosa A. HOEKSTRA, Auteur ; Carrie ALLISON, Auteur ; Sally WHEELWRIGHT, Auteur ; Carol BRAYNE, Auteur ; Fiona E. MATTHEWS, Auteur ; Simon BARON-COHEN, Auteur . - 2012 . - p.734-739. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 42-5 (May 2012) . - p.734-739 Mots-clés : Autism spectrum conditions  Prevalence  Regional differences  Hyper-systemizing theory Index. décimale : PER Périodiques Résumé : We tested for differences in the prevalence of autism spectrum conditions (ASC) in school-aged children in three geographical regions in the Netherlands. Schools were asked to provide the number of children enrolled, the number having a clinical diagnosis of ASC and/or two control neurodevelopmental conditions. Prevalence was evaluated by negative binomial regression and adjustments were made for non-response and size of the schools. The prevalence estimates of ASC in Eindhoven was 229 per 10,000, significantly higher than in Haarlem (84 per 10,000) and Utrecht (57 per 10,000), whilst the prevalence for the control conditions were similar in all regions. Phase two is planned to validate school-reported cases using standardized diagnostic methods and to explore the possible causes for these differences. En ligne : http://dx.doi.org/10.1007/s10803-011-1302-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=154

Autism and chronic ill health: an observational study of symptoms and diagnoses of central sensitivity syndromes in autistic adults / Sean GRANT in Molecular Autism, 13 (2022)  

Public ISBD [article]  inMolecular Autism > 13 (2022) . - 7p. Titre : Autism and chronic ill health: an observational study of symptoms and diagnoses of central sensitivity syndromes in autistic adults Type de document : texte imprimé Auteurs : Sean GRANT, Auteur ; Sam NORTON, Auteur ; Ricarda F. WEILAND, Auteur ; Anke M. SCHEEREN, Auteur ; Sander BEGEER, Auteur ; Rosa A. HOEKSTRA, Auteur Article en page(s) : 7p. Langues : Anglais (eng) Mots-clés : Autism  Central sensitisation  Chronic pain  Fatigue  Fibromyalgia  Sensory processing  Sensory sensitivity Index. décimale : PER Périodiques Résumé : BACKGROUND: Autistic adults, particularly women, are more likely to experience chronic ill health than the general population. Central sensitivity syndromes (CSS) are a group of related conditions that are thought to include an underlying sensitisation of the central nervous system; heightened sensory sensitivity is a common feature. Anecdotal evidence suggests autistic adults may be more prone to developing a CSS. This study aimed to investigate the occurrence of CSS diagnoses and symptoms in autistic adults, and to explore whether CSS symptoms were related to autistic traits, mental health, sensory sensitivity, or gender. METHODS: The full sample of participants included 973 autistic adults (410 men, 563 women, mean age = 44.6) registered at the Netherlands Autism Register, who completed questionnaires assessing autistic traits, sensory sensitivity, CSS, physical and mental health symptoms. The reliability and validity of the Central Sensitization Inventory (CSI) in an autistic sample was established using exploratory and confirmatory factor analyses. Chi(2) analyses, independent t-tests, hierarchical regression and path analysis were used to analyse relationships between CSS symptoms, autistic traits, measures of mental health and wellbeing, sensory sensitivity, age and gender. RESULTS: 21% of participants reported one or more CSS diagnosis, and 60% scored at or above the clinical cut-off for a CSS. Autistic women were more likely to report a CSS diagnosis and experienced more CSS symptoms than men. Sensory sensitivity, anxiety, age and gender were significant predictors of CSS symptoms, with sensory sensitivity and anxiety fully mediating the relationship between autistic traits and CSS symptoms. LIMITATIONS: Although this study included a large sample of autistic adults, we did not have a control group or a CSS only group. We also could not include a non-binary group due to lack of statistical power. CONCLUSIONS: CSS diagnoses and symptoms appear to be very common in the autistic population. Increased awareness of an association between autism and central sensitisation should inform clinicians and guide diagnostic practice, particularly for women where CSS are common and autism under recognised. En ligne : http://dx.doi.org/10.1186/s13229-022-00486-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=459 [article] Autism and chronic ill health: an observational study of symptoms and diagnoses of central sensitivity syndromes in autistic adults [texte imprimé] / Sean GRANT, Auteur ; Sam NORTON, Auteur ; Ricarda F. WEILAND, Auteur ; Anke M. SCHEEREN, Auteur ; Sander BEGEER, Auteur ; Rosa A. HOEKSTRA, Auteur . - 7p. Langues : Anglais (eng) in Molecular Autism > 13 (2022) . - 7p. Mots-clés : Autism  Central sensitisation  Chronic pain  Fatigue  Fibromyalgia  Sensory processing  Sensory sensitivity Index. décimale : PER Périodiques Résumé : BACKGROUND: Autistic adults, particularly women, are more likely to experience chronic ill health than the general population. Central sensitivity syndromes (CSS) are a group of related conditions that are thought to include an underlying sensitisation of the central nervous system; heightened sensory sensitivity is a common feature. Anecdotal evidence suggests autistic adults may be more prone to developing a CSS. This study aimed to investigate the occurrence of CSS diagnoses and symptoms in autistic adults, and to explore whether CSS symptoms were related to autistic traits, mental health, sensory sensitivity, or gender. METHODS: The full sample of participants included 973 autistic adults (410 men, 563 women, mean age = 44.6) registered at the Netherlands Autism Register, who completed questionnaires assessing autistic traits, sensory sensitivity, CSS, physical and mental health symptoms. The reliability and validity of the Central Sensitization Inventory (CSI) in an autistic sample was established using exploratory and confirmatory factor analyses. Chi(2) analyses, independent t-tests, hierarchical regression and path analysis were used to analyse relationships between CSS symptoms, autistic traits, measures of mental health and wellbeing, sensory sensitivity, age and gender. RESULTS: 21% of participants reported one or more CSS diagnosis, and 60% scored at or above the clinical cut-off for a CSS. Autistic women were more likely to report a CSS diagnosis and experienced more CSS symptoms than men. Sensory sensitivity, anxiety, age and gender were significant predictors of CSS symptoms, with sensory sensitivity and anxiety fully mediating the relationship between autistic traits and CSS symptoms. LIMITATIONS: Although this study included a large sample of autistic adults, we did not have a control group or a CSS only group. We also could not include a non-binary group due to lack of statistical power. CONCLUSIONS: CSS diagnoses and symptoms appear to be very common in the autistic population. Increased awareness of an association between autism and central sensitisation should inform clinicians and guide diagnostic practice, particularly for women where CSS are common and autism under recognised. En ligne : http://dx.doi.org/10.1186/s13229-022-00486-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=459

Autism and family involvement in the right to education in the EU: policy mapping in the Netherlands, Belgium and Germany / Robin VAN KESSEL in Molecular Autism, 10 (2019)  

Public ISBD [article]  inMolecular Autism > 10 (2019) . - 43 p. Titre : Autism and family involvement in the right to education in the EU: policy mapping in the Netherlands, Belgium and Germany Type de document : texte imprimé Auteurs : Robin VAN KESSEL, Auteur ; Andres ROMAN-URRESTARAZU, Auteur ; Amber N.V. RUIGROK, Auteur ; Richard HOLT, Auteur ; Matt COMMERS, Auteur ; Rosa A. HOEKSTRA, Auteur ; Katarzyna CZABANOWSKA, Auteur ; Carol BRAYNE, Auteur ; Simon BARON-COHEN, Auteur Article en page(s) : 43 p. Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Introduction: In recent years, the universal right to education has been emphasised by the Universal Declaration on Human Rights and the Convention on the Rights of Persons with Disabilities. In this paper, we mapped policies relevant to special education needs and parental involvement of children with autism at an international level and in the Netherlands, Germany and Belgium. Methods: A policy path analysis was performed using a scoping review as an underlying methodological framework. This allowed for a rapid gathering of available data from which a timeline of adopted policies was derived. Results and discussion: Internationally, the universal right to education has been reinforced repeatedly and the values of the Universal Declaration of Human Rights have been reiterated with every reinforcement. Also, the additional support that a child with special education needs requires is acknowledged and measures are taken to facilitate access to any education for all children. There are slight cross-country differences between the countries under study, attributable to differences in national regulation of education. However, all countries have progressed to a state where the right to education for all children is integrated on a policy level and measures are taken to enable children with special needs to participate in education. Recently, an attempt to implement a form of inclusive education was made as a form of special needs provision. Nevertheless, nowhere has this been implemented successfully yet. Conclusion: The Universal Declaration of Human Rights was a critical juncture in international policy and created an environment where the universal right to education has been implemented for all children in the countries under study. En ligne : http://dx.doi.org/10.1186/s13229-019-0297-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=414 [article] Autism and family involvement in the right to education in the EU: policy mapping in the Netherlands, Belgium and Germany [texte imprimé] / Robin VAN KESSEL, Auteur ; Andres ROMAN-URRESTARAZU, Auteur ; Amber N.V. RUIGROK, Auteur ; Richard HOLT, Auteur ; Matt COMMERS, Auteur ; Rosa A. HOEKSTRA, Auteur ; Katarzyna CZABANOWSKA, Auteur ; Carol BRAYNE, Auteur ; Simon BARON-COHEN, Auteur . - 43 p. Langues : Anglais (eng) in Molecular Autism > 10 (2019) . - 43 p. Index. décimale : PER Périodiques Résumé : Introduction: In recent years, the universal right to education has been emphasised by the Universal Declaration on Human Rights and the Convention on the Rights of Persons with Disabilities. In this paper, we mapped policies relevant to special education needs and parental involvement of children with autism at an international level and in the Netherlands, Germany and Belgium. Methods: A policy path analysis was performed using a scoping review as an underlying methodological framework. This allowed for a rapid gathering of available data from which a timeline of adopted policies was derived. Results and discussion: Internationally, the universal right to education has been reinforced repeatedly and the values of the Universal Declaration of Human Rights have been reiterated with every reinforcement. Also, the additional support that a child with special education needs requires is acknowledged and measures are taken to facilitate access to any education for all children. There are slight cross-country differences between the countries under study, attributable to differences in national regulation of education. However, all countries have progressed to a state where the right to education for all children is integrated on a policy level and measures are taken to enable children with special needs to participate in education. Recently, an attempt to implement a form of inclusive education was made as a form of special needs provision. Nevertheless, nowhere has this been implemented successfully yet. Conclusion: The Universal Declaration of Human Rights was a critical juncture in international policy and created an environment where the universal right to education has been implemented for all children in the countries under study. En ligne : http://dx.doi.org/10.1186/s13229-019-0297-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=414

Autism as an international journal: Equity, inclusion and cultural humility for a global authorship and readership / Kathy LEADBITTER in Autism, 29-5 (May 2025)  

Public ISBD [article]  inAutism > 29-5 (May 2025) . - p.1089-1094 Titre : Autism as an international journal: Equity, inclusion and cultural humility for a global authorship and readership Type de document : texte imprimé Auteurs : Kathy LEADBITTER, Auteur ; Sheffali GULATI, Auteur ; Elizabeth SHEPHARD, Auteur ; Rosa A. HOEKSTRA, Auteur Article en page(s) : p.1089-1094 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613251333822 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554 [article] Autism as an international journal: Equity, inclusion and cultural humility for a global authorship and readership [texte imprimé] / Kathy LEADBITTER, Auteur ; Sheffali GULATI, Auteur ; Elizabeth SHEPHARD, Auteur ; Rosa A. HOEKSTRA, Auteur . - p.1089-1094. Langues : Anglais (eng) in Autism > 29-5 (May 2025) . - p.1089-1094 Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613251333822 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554

Autism screening and diagnosis in low resource settings: Challenges and opportunities to enhance research and services worldwide / Maureen S. DURKIN in Autism Research, 8-5 (October 2015)  

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Autistic adults in China and the Netherlands: Proxy-reported community integration and life satisfaction / Sander BEGEER ; Rosa A. HOEKSTRA ; Chongying WANG ; Anke M. SCHEEREN in Autism, 28-12 (December 2024)  

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Brief report: Parenting stress among Chinese and Dutch caregivers of children with autism / Fangyuan LIU in Research in Autism Spectrum Disorders, 107 (September 2023)  

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Caregiver-centred empowerment for families raising autistic children: A qualitative case study from Argentina / Zsófia SZLAMKA in Autism, 28-11 (November 2024)  

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Central Sensitivity Symptoms and Autistic Traits in Autistic and Non-Autistic Adults / Sarah GRANT in Autism Research, 18-3 (March 2025)  

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Community involvement in PhD students' autism research projects: Challenges and opportunities / Elisa GENOVESI in Autism, 29-1 (January 2025)  

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A Conceptual Framework for Understanding the Cultural and Contextual Factors on Autism Across the Globe / Anne DE LEEUW in Autism Research, 13-7 (July 2020)  

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A cross-cultural study of autistic traits across India, Japan and the UK / Sophie CARRUTHERS in Molecular Autism, 9 (2018)  

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Ethiopian community health workers' beliefs and attitudes towards children with autism: Impact of a brief training intervention / Dejene TILAHUN in Autism, 23-1 (January 2019)  

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Evaluating the latent structure of the non-social domain of autism in autistic adults / Rachel GROVE in Molecular Autism, 12 (2021)  

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