Annual Research Review: Shifting from 'normal science' to neurodiversity in autism science / Elizabeth PELLICANO in Journal of Child Psychology and Psychiatry, 63-4 (April 2022)  

Public ISBD [article]  inJournal of Child Psychology and Psychiatry > 63-4 (April 2022) . - p.381-396 Titre : Annual Research Review: Shifting from 'normal science' to neurodiversity in autism science Type de document : Texte imprimé et/ou numérique Auteurs : Elizabeth PELLICANO, Auteur ; Jacquiline DEN HOUTING, Auteur Article en page(s) : p.381-396 Langues : Anglais (eng) Mots-clés : Autism  ethics  medical model  neurodiversity  social model of disability Index. décimale : PER Périodiques Résumé : Since its initial description, the concept of autism has been firmly rooted within the conventional medical paradigm of child psychiatry. Increasingly, there have been calls from the autistic community and, more recently, nonautistic researchers, to rethink the way in which autism science is framed and conducted. Neurodiversity, where autism is seen as one form of variation within a diversity of minds, has been proposed as a potential alternative paradigm. In this review, we concentrate on three major challenges to the conventional medical paradigm - an overfocus on deficits, an emphasis on the individual as opposed to their broader context and a narrowness of perspective - each of which necessarily constrains what we can know about autism and how we are able to know it. We then outline the ways in which fundamental elements of the neurodiversity paradigm can potentially help researchers respond to the medical model's limitations. We conclude by considering the implications of a shift towards the neurodiversity paradigm for autism science. En ligne : http://dx.doi.org/10.1111/jcpp.13534 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475 [article] Annual Research Review: Shifting from 'normal science' to neurodiversity in autism science [Texte imprimé et/ou numérique] / Elizabeth PELLICANO, Auteur ; Jacquiline DEN HOUTING, Auteur . - p.381-396. Langues : Anglais (eng) in Journal of Child Psychology and Psychiatry > 63-4 (April 2022) . - p.381-396 Mots-clés : Autism  ethics  medical model  neurodiversity  social model of disability Index. décimale : PER Périodiques Résumé : Since its initial description, the concept of autism has been firmly rooted within the conventional medical paradigm of child psychiatry. Increasingly, there have been calls from the autistic community and, more recently, nonautistic researchers, to rethink the way in which autism science is framed and conducted. Neurodiversity, where autism is seen as one form of variation within a diversity of minds, has been proposed as a potential alternative paradigm. In this review, we concentrate on three major challenges to the conventional medical paradigm - an overfocus on deficits, an emphasis on the individual as opposed to their broader context and a narrowness of perspective - each of which necessarily constrains what we can know about autism and how we are able to know it. We then outline the ways in which fundamental elements of the neurodiversity paradigm can potentially help researchers respond to the medical model's limitations. We conclude by considering the implications of a shift towards the neurodiversity paradigm for autism science. En ligne : http://dx.doi.org/10.1111/jcpp.13534 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475

Anxiety-related symptomatology in young children on the autism spectrum / D. KEEN in Autism, 23-2 (February 2019)  

Public ISBD [article]  inAutism > 23-2 (February 2019) . - p.350-358 Titre : Anxiety-related symptomatology in young children on the autism spectrum Type de document : Texte imprimé et/ou numérique Auteurs : D. KEEN, Auteur ; D. ADAMS, Auteur ; K. SIMPSON, Auteur ; Jacquiline DEN HOUTING, Auteur ; J. ROBERTS, Auteur Article en page(s) : p.350-358 Langues : Anglais (eng) Mots-clés : anxiety  autism spectrum disorder  autistic children  parent report Index. décimale : PER Périodiques Résumé : Anxiety symptomatology is frequently reported in autistic children, and the prevalence of anxiety disorder is estimated at around 40%. However, most studies have focused upon children of age 8 years or above, so little is known about early signs of anxiety in younger children with autism. This study sought to describe anxiety-related symptomatology in 95 5- to 6-year-old autistic children using the Anxiety Scale for Children with Autism Spectrum Disorder. Wide variability was found in levels of symptomatology with the most frequently reported items within the 'uncertainty' subscale and the least frequently reported items in the 'anxious arousal' subscale. Comparisons of those with scores less than or greater than 70 on adaptive behaviour suggests some influence of ability on presentation of anxiety-related symptomatology. En ligne : http://dx.doi.org/10.1177/1362361317734692 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=383 [article] Anxiety-related symptomatology in young children on the autism spectrum [Texte imprimé et/ou numérique] / D. KEEN, Auteur ; D. ADAMS, Auteur ; K. SIMPSON, Auteur ; Jacquiline DEN HOUTING, Auteur ; J. ROBERTS, Auteur . - p.350-358. Langues : Anglais (eng) in Autism > 23-2 (February 2019) . - p.350-358 Mots-clés : anxiety  autism spectrum disorder  autistic children  parent report Index. décimale : PER Périodiques Résumé : Anxiety symptomatology is frequently reported in autistic children, and the prevalence of anxiety disorder is estimated at around 40%. However, most studies have focused upon children of age 8 years or above, so little is known about early signs of anxiety in younger children with autism. This study sought to describe anxiety-related symptomatology in 95 5- to 6-year-old autistic children using the Anxiety Scale for Children with Autism Spectrum Disorder. Wide variability was found in levels of symptomatology with the most frequently reported items within the 'uncertainty' subscale and the least frequently reported items in the 'anxious arousal' subscale. Comparisons of those with scores less than or greater than 70 on adaptive behaviour suggests some influence of ability on presentation of anxiety-related symptomatology. En ligne : http://dx.doi.org/10.1177/1362361317734692 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=383

COVID-19, social isolation and the mental health of autistic people and their families: A qualitative study / Elizabeth PELLICANO in Autism, 26-4 (May 2022)  

Public ISBD [article]  inAutism > 26-4 (May 2022) . - p.914-927 Titre : COVID-19, social isolation and the mental health of autistic people and their families: A qualitative study Type de document : Texte imprimé et/ou numérique Auteurs : Elizabeth PELLICANO, Auteur ; Simon BRETT, Auteur ; Jacquiline DEN HOUTING, Auteur ; Melanie HEYWORTH, Auteur ; Iliana MAGIATI, Auteur ; Robyn STEWARD, Auteur ; Anna URBANOWICZ, Auteur ; Marc STEARS, Auteur Article en page(s) : p.914-927 Langues : Anglais (eng) Mots-clés : Adolescent  Adult  Autism Spectrum Disorder  Autistic Disorder  Covid-19  Child  Communicable Disease Control  Humans  Mental Health  Pandemics  Social Isolation  participatory research  qualitative research Index. décimale : PER Périodiques Résumé : In this study, we show that autistic people and their families have found it very difficult to deal with the lockdowns during the COVID-19 pandemic. Autistic and non-autistic researchers spoke to 144 people, including 44 autistic adults, 84 parents of autistic children and 16 autistic young people (12-18?years old). We asked them about their everyday lives and mental health during lockdown. People told us that they enjoyed having fewer obligations and demands compared to pre-COVID-19 life. They felt that life was quieter and calmer. But people also told us again and again how much they missed meeting people in real life, especially their friends, and their therapists and support workers. People told us that their mental health suffered because they did not have contact with their friends and services. Importantly, many people (including researchers) think that autistic people do not want friends or to be around people. But our results show that is not true. Many autistic people do want friends and to be around other people. Some people's mental health has been damaged by not being able to see people during COVID-19. Autistic people need support in many areas of life so they can keep socialising and seeing their friends even through difficult times, like pandemics. En ligne : https://dx.doi.org/10.1177/13623613211035936 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473 [article] COVID-19, social isolation and the mental health of autistic people and their families: A qualitative study [Texte imprimé et/ou numérique] / Elizabeth PELLICANO, Auteur ; Simon BRETT, Auteur ; Jacquiline DEN HOUTING, Auteur ; Melanie HEYWORTH, Auteur ; Iliana MAGIATI, Auteur ; Robyn STEWARD, Auteur ; Anna URBANOWICZ, Auteur ; Marc STEARS, Auteur . - p.914-927. Langues : Anglais (eng) in Autism > 26-4 (May 2022) . - p.914-927 Mots-clés : Adolescent  Adult  Autism Spectrum Disorder  Autistic Disorder  Covid-19  Child  Communicable Disease Control  Humans  Mental Health  Pandemics  Social Isolation  participatory research  qualitative research Index. décimale : PER Périodiques Résumé : In this study, we show that autistic people and their families have found it very difficult to deal with the lockdowns during the COVID-19 pandemic. Autistic and non-autistic researchers spoke to 144 people, including 44 autistic adults, 84 parents of autistic children and 16 autistic young people (12-18?years old). We asked them about their everyday lives and mental health during lockdown. People told us that they enjoyed having fewer obligations and demands compared to pre-COVID-19 life. They felt that life was quieter and calmer. But people also told us again and again how much they missed meeting people in real life, especially their friends, and their therapists and support workers. People told us that their mental health suffered because they did not have contact with their friends and services. Importantly, many people (including researchers) think that autistic people do not want friends or to be around people. But our results show that is not true. Many autistic people do want friends and to be around other people. Some people's mental health has been damaged by not being able to see people during COVID-19. Autistic people need support in many areas of life so they can keep socialising and seeing their friends even through difficult times, like pandemics. En ligne : https://dx.doi.org/10.1177/13623613211035936 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473

Exploring anxiety symptomatology in school-aged autistic children using an autism-specific assessment / Jacquiline DEN HOUTING in Research in Autism Spectrum Disorders, 50 (June 2018)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 50 (June 2018) . - p.73-82 Titre : Exploring anxiety symptomatology in school-aged autistic children using an autism-specific assessment Type de document : Texte imprimé et/ou numérique Auteurs : Jacquiline DEN HOUTING, Auteur ; Dawn ADAMS, Auteur ; Jacqueline ROBERTS, Auteur ; Deb KEEN, Auteur Année de publication : 2018 Article en page(s) : p.73-82 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder  Anxiety  Assessment  Parent report  Anxiety scale for children with Autism Spectrum Disorder Index. décimale : PER Périodiques Résumé : Background Accurate assessment of anxiety symptomatology in autistic children can be difficult, in part due to a lack of appropriate assessment tools. The newly-developed Anxiety Scale for Children with Autism Spectrum Disorder (ASC-ASD) is designed specifically for the assessment of anxiety symptomatology in autistic children. The aim of this study was to use the ASC-ASD to explore the profile of typical and atypical anxiety symptomatology in autistic children; to explore associations of anxiety symptomatology with adaptive behaviour and autistic characteristics; and to identify level of agreement between ASC-ASD scores and parent-reported anxiety diagnoses. Method 100 parents of 9–12?year old autistic children completed the ASC-ASD, Vineland Adaptive Behavior Scales ? Second Edition, and Social Communication Questionnaire as part of a longitudinal study. Results High rates of anxiety symptomatology were found, with 63% of parents rating their children in the clinical range. Atypical symptoms of anxiety were endorsed at high frequency. Items within the Uncertainty subscale were most frequently endorsed, and items within the Anxious Arousal scale were endorsed least often. Children with a parent-reported diagnosis of anxiety disorder scored significantly higher on the ASC-ASD than those without an anxiety diagnosis. Conclusions This is one of the first studies to explore anxiety symptomatology in autistic children using an autism-specific measure of anxiety. Findings suggest that the ASC-ASD may be a useful tool for the assessment of anxiety symptomatology in autistic children. En ligne : https://doi.org/10.1016/j.rasd.2018.03.005 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=356 [article] Exploring anxiety symptomatology in school-aged autistic children using an autism-specific assessment [Texte imprimé et/ou numérique] / Jacquiline DEN HOUTING, Auteur ; Dawn ADAMS, Auteur ; Jacqueline ROBERTS, Auteur ; Deb KEEN, Auteur . - 2018 . - p.73-82. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 50 (June 2018) . - p.73-82 Mots-clés : Autism Spectrum Disorder  Anxiety  Assessment  Parent report  Anxiety scale for children with Autism Spectrum Disorder Index. décimale : PER Périodiques Résumé : Background Accurate assessment of anxiety symptomatology in autistic children can be difficult, in part due to a lack of appropriate assessment tools. The newly-developed Anxiety Scale for Children with Autism Spectrum Disorder (ASC-ASD) is designed specifically for the assessment of anxiety symptomatology in autistic children. The aim of this study was to use the ASC-ASD to explore the profile of typical and atypical anxiety symptomatology in autistic children; to explore associations of anxiety symptomatology with adaptive behaviour and autistic characteristics; and to identify level of agreement between ASC-ASD scores and parent-reported anxiety diagnoses. Method 100 parents of 9–12?year old autistic children completed the ASC-ASD, Vineland Adaptive Behavior Scales ? Second Edition, and Social Communication Questionnaire as part of a longitudinal study. Results High rates of anxiety symptomatology were found, with 63% of parents rating their children in the clinical range. Atypical symptoms of anxiety were endorsed at high frequency. Items within the Uncertainty subscale were most frequently endorsed, and items within the Anxious Arousal scale were endorsed least often. Children with a parent-reported diagnosis of anxiety disorder scored significantly higher on the ASC-ASD than those without an anxiety diagnosis. Conclusions This is one of the first studies to explore anxiety symptomatology in autistic children using an autism-specific measure of anxiety. Findings suggest that the ASC-ASD may be a useful tool for the assessment of anxiety symptomatology in autistic children. En ligne : https://doi.org/10.1016/j.rasd.2018.03.005 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=356

'I'm not just a guinea pig': Academic and community perceptions of participatory autism research / Jacquiline DEN HOUTING in Autism, 25-1 (January 2021)  

Public ISBD [article]  inAutism > 25-1 (January 2021) . - p.148-163 Titre : 'I'm not just a guinea pig': Academic and community perceptions of participatory autism research Type de document : Texte imprimé et/ou numérique Auteurs : Jacquiline DEN HOUTING, Auteur ; Julianne HIGGINS, Auteur ; Kathy ISAACS, Auteur ; Joanne MAHONY, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.148-163 Langues : Anglais (eng) Mots-clés : autism  co-production  community engagement  participatory research  patient and public involvement  stakeholders Index. décimale : PER Périodiques Résumé : Participatory research means working together (engaging) with the community that is affected by research to make decisions about that research. Participatory research is common in some fields, but it is still rare in autism research. In this study, we wanted to find out how Australian autism researchers and community members feel about participatory research. We worked with an Autistic Advisory Group to design this study, understand the results and write this article. We asked 127 people, all working on research from the Cooperative Research Centre for Living with Autism, to complete an online survey about participatory research. The survey included some questions that were answered on rating scales, and some where participants wrote their own answers. Seventy-nine people (64 researchers and 15 community members) completed most or all of the survey. The rating scales showed that most participants (82%) supported moderate or extensive community engagement in research, and most participants (72%) thought there should be more community engagement in autism research. In general, the participants rated their experiences of participatory research positively. Using the participants' own written answers, we found four main ideas: (1) participatory research is important, but difficult; (2) many people do not fully understand what participatory research is; (3) academics and community members do not work together as = and (4) research systems are not designed for participatory research. Our results suggest that autism researchers and community members want to do more participatory research, but they might need training, support and funding to do participatory research well. En ligne : http://dx.doi.org/10.1177/1362361320951696 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437 [article] 'I'm not just a guinea pig': Academic and community perceptions of participatory autism research [Texte imprimé et/ou numérique] / Jacquiline DEN HOUTING, Auteur ; Julianne HIGGINS, Auteur ; Kathy ISAACS, Auteur ; Joanne MAHONY, Auteur ; Elizabeth PELLICANO, Auteur . - p.148-163. Langues : Anglais (eng) in Autism > 25-1 (January 2021) . - p.148-163 Mots-clés : autism  co-production  community engagement  participatory research  patient and public involvement  stakeholders Index. décimale : PER Périodiques Résumé : Participatory research means working together (engaging) with the community that is affected by research to make decisions about that research. Participatory research is common in some fields, but it is still rare in autism research. In this study, we wanted to find out how Australian autism researchers and community members feel about participatory research. We worked with an Autistic Advisory Group to design this study, understand the results and write this article. We asked 127 people, all working on research from the Cooperative Research Centre for Living with Autism, to complete an online survey about participatory research. The survey included some questions that were answered on rating scales, and some where participants wrote their own answers. Seventy-nine people (64 researchers and 15 community members) completed most or all of the survey. The rating scales showed that most participants (82%) supported moderate or extensive community engagement in research, and most participants (72%) thought there should be more community engagement in autism research. In general, the participants rated their experiences of participatory research positively. Using the participants' own written answers, we found four main ideas: (1) participatory research is important, but difficult; (2) many people do not fully understand what participatory research is; (3) academics and community members do not work together as = and (4) research systems are not designed for participatory research. Our results suggest that autism researchers and community members want to do more participatory research, but they might need training, support and funding to do participatory research well. En ligne : http://dx.doi.org/10.1177/1362361320951696 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437

Inclusion and Rigor in Qualitative Autism Research: A Response to Van Schalkwyk and Dewinter (2020) / Laura CRANE in Journal of Autism and Developmental Disorders, 51-5 (May 2021)  

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“It just fits my needs better”: Autistic students and parents’ experiences of learning from home during the early phase of the COVID-19 pandemic / Melanie HEYWORTH in Autism & Developmental Language Impairments, 6 (January-December 2021)  

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Neurodiversity: An insider's perspective / Jacquiline DEN HOUTING in Autism, 23-2 (February 2019)  

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Participatory autism research: Early career and established researchers' views and experiences / H. PICKARD in Autism, 26-1 (January 2022)  

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A Portfolio Analysis of Autism Research Funding in Australia, 2008-2017 / Jacquiline DEN HOUTING in Journal of Autism and Developmental Disorders, 49-11 (November 2019)  

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