Autistic adults' views on the design and processes within randomised controlled trials: The APRiCoT study / Lucy BEASANT in Autism, 28-6 (June 2024)  

Public ISBD [article]  inAutism > 28-6 (June 2024) . - p.1540-1550 Titre : Autistic adults' views on the design and processes within randomised controlled trials: The APRiCoT study Type de document : Texte imprimé et/ou numérique Auteurs : Lucy BEASANT, Auteur ; Alba REALPE, Auteur ; Sarah DOUGLAS, Auteur ; Lorcan KENNY, Auteur ; Dheeraj RAI, Auteur ; Nicola MILLS, Auteur Article en page(s) : p.1540-1550 Langues : Anglais (eng) Mots-clés : autistic adults  co-production  learning disabilities  qualitative research  trial methodology Index. décimale : PER Périodiques Résumé : The purpose of this study is to explore the views of autistic adults on randomised controlled trials, specifically on processes such as randomisation and blinding, to understand the barriers and facilitators for recruiting autistic people to randomised controlled trials involving medications. We conducted one-to-one interviews with 49 autistic adults. Interviews were audio-recorded and analysed thematically. The participants found randomised controlled trial processes acceptable and linked positive attitudes towards randomised controlled trial participation to autistic peoples' heightened sense of fairness and preference for evidence-driven knowledge. However, randomised controlled trial designs may be incompatible with a (1) preference for a controlled predictable world, (2) perceived vulnerability at physical and mental health levels and (3) history of misunderstanding and exclusion, crucially from healthcare professionals. Suggestions that emerged from our findings include efforts to co-produce research to nurture trust and adapting communication practices to improve access to trials. Autistic people are a highly motivated group to work with research teams to mitigate barriers to randomised controlled trial participation. We explored what psychosocial determinants play a role in the acceptability of randomised controlled trials to test interventions to improve quality of life and mental health in autistic adults. The study provides useful information that may help the design and conduct of more accessible trials with and for the autistic community. Lay abstract Large randomised controlled trials are used to test healthcare treatments. Yet there are no large randomised controlled trials on effective treatments for common mental health issues affecting autistic adults. The purpose of this study was to learn what autistic adults think about randomised controlled trials in preparation for a randomised controlled trial testing a medication for anxiety. This means we wanted to know their opinions about the way randomised controlled trials are done, such as how people are chosen to be in the study and how the study is carried out. We did this by talking to 49 autistic adults individually and asking them questions. We found that most of the people we talked to were okay with the way randomised controlled trials are done. They thought it was fair and they liked that it was based on evidence. However, some autistic people might find it hard to take part in randomised controlled trials. Some people did not like the uncertainty of not knowing what treatment they would receive in a randomised controlled trial. Others felt too vulnerable and may have had bad experiences with healthcare in the past. We found that it is important to involve autistic people early on and at every stage when designing a clinical trial. Care about how clear and precise the study communication is will build trust and improve access to research. Our study indicates that it is possible to conduct large randomised controlled trials with and for autistic people. This can ultimately contribute to the improvement of healthcare outcomes for this population. En ligne : https://dx.doi.org/10.1177/13623613231202432 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 [article] Autistic adults' views on the design and processes within randomised controlled trials: The APRiCoT study [Texte imprimé et/ou numérique] / Lucy BEASANT, Auteur ; Alba REALPE, Auteur ; Sarah DOUGLAS, Auteur ; Lorcan KENNY, Auteur ; Dheeraj RAI, Auteur ; Nicola MILLS, Auteur . - p.1540-1550. Langues : Anglais (eng) in Autism > 28-6 (June 2024) . - p.1540-1550 Mots-clés : autistic adults  co-production  learning disabilities  qualitative research  trial methodology Index. décimale : PER Périodiques Résumé : The purpose of this study is to explore the views of autistic adults on randomised controlled trials, specifically on processes such as randomisation and blinding, to understand the barriers and facilitators for recruiting autistic people to randomised controlled trials involving medications. We conducted one-to-one interviews with 49 autistic adults. Interviews were audio-recorded and analysed thematically. The participants found randomised controlled trial processes acceptable and linked positive attitudes towards randomised controlled trial participation to autistic peoples' heightened sense of fairness and preference for evidence-driven knowledge. However, randomised controlled trial designs may be incompatible with a (1) preference for a controlled predictable world, (2) perceived vulnerability at physical and mental health levels and (3) history of misunderstanding and exclusion, crucially from healthcare professionals. Suggestions that emerged from our findings include efforts to co-produce research to nurture trust and adapting communication practices to improve access to trials. Autistic people are a highly motivated group to work with research teams to mitigate barriers to randomised controlled trial participation. We explored what psychosocial determinants play a role in the acceptability of randomised controlled trials to test interventions to improve quality of life and mental health in autistic adults. The study provides useful information that may help the design and conduct of more accessible trials with and for the autistic community. Lay abstract Large randomised controlled trials are used to test healthcare treatments. Yet there are no large randomised controlled trials on effective treatments for common mental health issues affecting autistic adults. The purpose of this study was to learn what autistic adults think about randomised controlled trials in preparation for a randomised controlled trial testing a medication for anxiety. This means we wanted to know their opinions about the way randomised controlled trials are done, such as how people are chosen to be in the study and how the study is carried out. We did this by talking to 49 autistic adults individually and asking them questions. We found that most of the people we talked to were okay with the way randomised controlled trials are done. They thought it was fair and they liked that it was based on evidence. However, some autistic people might find it hard to take part in randomised controlled trials. Some people did not like the uncertainty of not knowing what treatment they would receive in a randomised controlled trial. Others felt too vulnerable and may have had bad experiences with healthcare in the past. We found that it is important to involve autistic people early on and at every stage when designing a clinical trial. Care about how clear and precise the study communication is will build trust and improve access to research. Our study indicates that it is possible to conduct large randomised controlled trials with and for autistic people. This can ultimately contribute to the improvement of healthcare outcomes for this population. En ligne : https://dx.doi.org/10.1177/13623613231202432 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529

Comparing the Executive Function Ability of Autistic and Non-autistic Adolescents with a Manualised Battery of Neuropsychological Tasks / Lorcan KENNY in Journal of Autism and Developmental Disorders, 52-7 (July 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-7 (July 2022) . - p.3169-3181 Titre : Comparing the Executive Function Ability of Autistic and Non-autistic Adolescents with a Manualised Battery of Neuropsychological Tasks Type de document : Texte imprimé et/ou numérique Auteurs : Lorcan KENNY, Auteur ; Anna REMINGTON, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.3169-3181 Langues : Anglais (eng) Mots-clés : Adolescent  Adult  Autism Spectrum Disorder  Autistic Disorder  Child  Cognition  Executive Function  Humans  Memory, Short-Term  Neuropsychological Tests  Young Adult  Cognitive ability  NIH-EXAMINER battery Index. décimale : PER Périodiques Résumé : Performance on a single executive function (EF) task (e.g., a card sorting task) is often taken to represent ability on the underlying subcomponent of EF (e.g., set shifting) without accounting for the non-specific and non-executive skills employed to complete the task. This study used a manualised battery of EF tasks to derive individual task scores and latent EF scores. Seventy-nine adolescents aged between 11 and 19 years, including 37 autistic and 42 non-autistic participants, matched on cognitive ability, completed the battery. Autistic adolescents had moderate global EF difficulties and had significantly more difficulties on some individual tasks. However, the samples did not differ on any of the specific individual subcomponents of EF (fluency, cognitive control and working memory). En ligne : http://dx.doi.org/10.1007/s10803-021-05034-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=477 [article] Comparing the Executive Function Ability of Autistic and Non-autistic Adolescents with a Manualised Battery of Neuropsychological Tasks [Texte imprimé et/ou numérique] / Lorcan KENNY, Auteur ; Anna REMINGTON, Auteur ; Elizabeth PELLICANO, Auteur . - p.3169-3181. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-7 (July 2022) . - p.3169-3181 Mots-clés : Adolescent  Adult  Autism Spectrum Disorder  Autistic Disorder  Child  Cognition  Executive Function  Humans  Memory, Short-Term  Neuropsychological Tests  Young Adult  Cognitive ability  NIH-EXAMINER battery Index. décimale : PER Périodiques Résumé : Performance on a single executive function (EF) task (e.g., a card sorting task) is often taken to represent ability on the underlying subcomponent of EF (e.g., set shifting) without accounting for the non-specific and non-executive skills employed to complete the task. This study used a manualised battery of EF tasks to derive individual task scores and latent EF scores. Seventy-nine adolescents aged between 11 and 19 years, including 37 autistic and 42 non-autistic participants, matched on cognitive ability, completed the battery. Autistic adolescents had moderate global EF difficulties and had significantly more difficulties on some individual tasks. However, the samples did not differ on any of the specific individual subcomponents of EF (fluency, cognitive control and working memory). En ligne : http://dx.doi.org/10.1007/s10803-021-05034-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=477

Drawing Firmer Conclusions: Autistic Children Show No Evidence of a Local Processing Bias in a Controlled Copying Task / Alastair D. SMITH in Journal of Autism and Developmental Disorders, 46-11 (November 2016)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 46-11 (November 2016) . - p.3481-3492 Titre : Drawing Firmer Conclusions: Autistic Children Show No Evidence of a Local Processing Bias in a Controlled Copying Task Type de document : Texte imprimé et/ou numérique Auteurs : Alastair D. SMITH, Auteur ; Lorcan KENNY, Auteur ; Anna RUDNICKA, Auteur ; Josie BRISCOE, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.3481-3492 Langues : Anglais (eng) Mots-clés : Autism  Drawing  Global  Local  Coherence  Grouping Index. décimale : PER Périodiques Résumé : Drawing tasks are frequently used to test competing theories of visuospatial skills in autism. Yet, methodological differences between studies have led to inconsistent findings. To distinguish between accounts based on local bias or global deficit, we present a simple task that has previously revealed dissociable local/global impairments in neuropsychological patients. Autistic and typical children copied corner elements, arranged in a square configuration. Grouping cues were manipulated to test whether global properties affected the accuracy of reproduction. All children were similarly affected by these manipulations. There was no group difference in the reproduction of local elements, although global accuracy was negatively related to better local processing for autistic children. These data speak against influential theories of visuospatial differences in autism. En ligne : http://dx.doi.org/10.1007/s10803-016-2889-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=294 [article] Drawing Firmer Conclusions: Autistic Children Show No Evidence of a Local Processing Bias in a Controlled Copying Task [Texte imprimé et/ou numérique] / Alastair D. SMITH, Auteur ; Lorcan KENNY, Auteur ; Anna RUDNICKA, Auteur ; Josie BRISCOE, Auteur ; Elizabeth PELLICANO, Auteur . - p.3481-3492. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 46-11 (November 2016) . - p.3481-3492 Mots-clés : Autism  Drawing  Global  Local  Coherence  Grouping Index. décimale : PER Périodiques Résumé : Drawing tasks are frequently used to test competing theories of visuospatial skills in autism. Yet, methodological differences between studies have led to inconsistent findings. To distinguish between accounts based on local bias or global deficit, we present a simple task that has previously revealed dissociable local/global impairments in neuropsychological patients. Autistic and typical children copied corner elements, arranged in a square configuration. Grouping cues were manipulated to test whether global properties affected the accuracy of reproduction. All children were similarly affected by these manipulations. There was no group difference in the reproduction of local elements, although global accuracy was negatively related to better local processing for autistic children. These data speak against influential theories of visuospatial differences in autism. En ligne : http://dx.doi.org/10.1007/s10803-016-2889-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=294

Excluded from school: Autistic students’ experiences of school exclusion and subsequent re-integration into school / Janina BREDE in Autism & Developmental Language Impairments, 2 (January-December 2017)  

Public ISBD [article]  inAutism & Developmental Language Impairments > 2 (January-December 2017) Titre : Excluded from school: Autistic students’ experiences of school exclusion and subsequent re-integration into school Type de document : Texte imprimé et/ou numérique Auteurs : Janina BREDE, Auteur ; Anna REMINGTON, Auteur ; Lorcan KENNY, Auteur ; Katy WARREN, Auteur ; Elizabeth PELLICANO, Auteur Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Background and aimsAll children have the right to receive an education and to be included in school. Yet young people on the autism spectrum, who are already vulnerable to poor health and social outcomes, are at increased risk of school exclusion. The current study sought to understand the key factors surrounding the school exclusion experiences of a group of autistic students with particularly complex needs, and their subsequent re-integration into education.MethodWe interviewed nine intellectually able students (eight male, one female; M age=13.3 years), all with a diagnosis of autism and the majority with a history of demand avoidant behaviour. We also interviewed their parents and teaching staff about the students? past and current school experiences. All students were currently being educated within an ?Inclusive Learning Hub?, specially designed to re-integrate excluded, autistic students back into school, which was situated within a larger autism special school.ResultsYoung people and their parents gave overwhelmingly negative accounts of the students? previous school experiences. Children?s perceived unmet needs, as well as inappropriate approaches by previous school staff in dealing with children?s difficulties, were felt to cause decline in children?s mental health and behaviour and, ultimately, led to their exclusion from school. Four key factors for successful reintegration into school were identified, including (i) making substantial adjustments to the physical environment, (ii) promoting strong staff?student relationships, (iii) understanding students? specific needs, and (iv) targeted efforts towards improving students? wellbeing.ConclusionThe culmination ? and escalation ? of challenges students experienced in the students? previous placements could suggest that the educational journey to exclusion from school is an inevitable consequence for at least some autistic children, including those with particularly complex behaviour, as sampled here. Yet, our study encouragingly showed that this was not necessarily the case. All the young people we spoke to reported being happy, safe and secure in their current placement, and re-engaged with school life. Outstanding issues remain, however, with regard to children?s reportedly slow academic progress and difficulties generalising the positive behaviour shown in school across home and community contexts.ImplicationsMore remains to be done to ensure that autistic children and young people?s progress at school is also mirrored in other settings. Future research also needs to develop more preventative approaches to avoid exclusion from school, including efforts towards improving education professionals? knowledge and awareness of autism, and effective ways of responding to these students? needs. En ligne : https://doi.org/10.1177/2396941517737511 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=386 [article] Excluded from school: Autistic students’ experiences of school exclusion and subsequent re-integration into school [Texte imprimé et/ou numérique] / Janina BREDE, Auteur ; Anna REMINGTON, Auteur ; Lorcan KENNY, Auteur ; Katy WARREN, Auteur ; Elizabeth PELLICANO, Auteur. Langues : Anglais (eng) in Autism & Developmental Language Impairments > 2 (January-December 2017) Index. décimale : PER Périodiques Résumé : Background and aimsAll children have the right to receive an education and to be included in school. Yet young people on the autism spectrum, who are already vulnerable to poor health and social outcomes, are at increased risk of school exclusion. The current study sought to understand the key factors surrounding the school exclusion experiences of a group of autistic students with particularly complex needs, and their subsequent re-integration into education.MethodWe interviewed nine intellectually able students (eight male, one female; M age=13.3 years), all with a diagnosis of autism and the majority with a history of demand avoidant behaviour. We also interviewed their parents and teaching staff about the students? past and current school experiences. All students were currently being educated within an ?Inclusive Learning Hub?, specially designed to re-integrate excluded, autistic students back into school, which was situated within a larger autism special school.ResultsYoung people and their parents gave overwhelmingly negative accounts of the students? previous school experiences. Children?s perceived unmet needs, as well as inappropriate approaches by previous school staff in dealing with children?s difficulties, were felt to cause decline in children?s mental health and behaviour and, ultimately, led to their exclusion from school. Four key factors for successful reintegration into school were identified, including (i) making substantial adjustments to the physical environment, (ii) promoting strong staff?student relationships, (iii) understanding students? specific needs, and (iv) targeted efforts towards improving students? wellbeing.ConclusionThe culmination ? and escalation ? of challenges students experienced in the students? previous placements could suggest that the educational journey to exclusion from school is an inevitable consequence for at least some autistic children, including those with particularly complex behaviour, as sampled here. Yet, our study encouragingly showed that this was not necessarily the case. All the young people we spoke to reported being happy, safe and secure in their current placement, and re-engaged with school life. Outstanding issues remain, however, with regard to children?s reportedly slow academic progress and difficulties generalising the positive behaviour shown in school across home and community contexts.ImplicationsMore remains to be done to ensure that autistic children and young people?s progress at school is also mirrored in other settings. Future research also needs to develop more preventative approaches to avoid exclusion from school, including efforts towards improving education professionals? knowledge and awareness of autism, and effective ways of responding to these students? needs. En ligne : https://doi.org/10.1177/2396941517737511 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=386

"The key to this is not so much the technology. It's the individual who is using the technology": Perspectives on telehealth delivery for autistic adults during the COVID-19 pandemic / Dorota ALI in Autism, 27-2 (February 2023)  

Public ISBD [article]  inAutism > 27-2 (February 2023) . - p.552-564 Titre : "The key to this is not so much the technology. It's the individual who is using the technology": Perspectives on telehealth delivery for autistic adults during the COVID-19 pandemic Type de document : Texte imprimé et/ou numérique Auteurs : Dorota ALI, Auteur ; Sarah O’BRIEN, Auteur ; Laura HULL, Auteur ; Lorcan KENNY, Auteur ; Will MANDY, Auteur Année de publication : 2023 Article en page(s) : p.552-564 Langues : Anglais (eng) Mots-clés : autism  mental health  physical health  service delivery  telehealth Index. décimale : PER Périodiques Résumé : The COVID-19 pandemic prompted a large-scale move to remote delivery of healthcare services. However, little research has directly explored telehealth experiences of autistic adults, a population strongly affected by health inequalities and care access barriers. This study sought telehealth experiences of 11 autistic adults (aged 27 “67 years), seven family members/carers (aged 44 “75) reporting about autistic people and six service providers. In-depth qualitative interviews were conducted with all participants, which were then thematically analysed. Two over-arching themes identified were technology aids communication and access “ except when it doesn’t, and in/flexibility, with a number of sub-themes. The themes, on one hand, highlighted positives of telehealth delivery, including easing some aspects of communication and decreased stress and, on the other hand, negatives, such as increased rigidity of the healthcare system, amplifying pre-existing barriers. Considering autistic people experience barriers to accessing healthcare, this study highlights such barriers could be, in some instances, addressed via remote delivery, as well as possible limitations of telehealth for some autistic adults. En ligne : http://dx.doi.org/10.1177/13623613221108010 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=493 [article] "The key to this is not so much the technology. It's the individual who is using the technology": Perspectives on telehealth delivery for autistic adults during the COVID-19 pandemic [Texte imprimé et/ou numérique] / Dorota ALI, Auteur ; Sarah O’BRIEN, Auteur ; Laura HULL, Auteur ; Lorcan KENNY, Auteur ; Will MANDY, Auteur . - 2023 . - p.552-564. Langues : Anglais (eng) in Autism > 27-2 (February 2023) . - p.552-564 Mots-clés : autism  mental health  physical health  service delivery  telehealth Index. décimale : PER Périodiques Résumé : The COVID-19 pandemic prompted a large-scale move to remote delivery of healthcare services. However, little research has directly explored telehealth experiences of autistic adults, a population strongly affected by health inequalities and care access barriers. This study sought telehealth experiences of 11 autistic adults (aged 27 “67 years), seven family members/carers (aged 44 “75) reporting about autistic people and six service providers. In-depth qualitative interviews were conducted with all participants, which were then thematically analysed. Two over-arching themes identified were technology aids communication and access “ except when it doesn’t, and in/flexibility, with a number of sub-themes. The themes, on one hand, highlighted positives of telehealth delivery, including easing some aspects of communication and decreased stress and, on the other hand, negatives, such as increased rigidity of the healthcare system, amplifying pre-existing barriers. Considering autistic people experience barriers to accessing healthcare, this study highlights such barriers could be, in some instances, addressed via remote delivery, as well as possible limitations of telehealth for some autistic adults. En ligne : http://dx.doi.org/10.1177/13623613221108010 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=493

"This is what we’ve always wanted": Perspectives on young autistic people’s transition from special school to mainstream satellite classes / Abigail CROYDON in Autism & Developmental Language Impairments, 4 (January-December 2019)  

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Which terms should be used to describe autism? Perspectives from the UK autism community / Lorcan KENNY in Autism, 20-4 (May 2016)  

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