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1.
Eur J Neurosci ; 60(3): 4148-4168, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-39001625

RESUMO

The conventional medical paradigm often focuses on deficits and impairments, failing to capture the rich tapestry of experiences and abilities inherent in neurodiversity conditions. In this article, we introduce the 3E-Cognition perspective, offering a paradigm shift by emphasizing the dynamic interplay between the brain, body, and environment in shaping cognitive processes. The perspective fosters a more inclusive and supportive understanding of neurodiversity, with potential applications across various domains such as education, workplace, and healthcare. We begin by introducing the 3E-Cognition principles: embodied, environmentally scaffolded, and enactive. Then, we explore how the 3E-Cognition perspective can be applied to create inclusive environments and experiences for neurodiverse individuals. We provide examples in the realms of education, workplace, and healthcare. In all of these domains, spaces, methodologies, epistemologies, and roles that cater to diverse needs and strengths can be designed using the 3E principles. Finally, we discuss the challenges and benefits of implementing the 3E-Cognition perspective. We focus on the need for technological advancements and research in complex real-world scenarios; we suggest mobile brain/body imaging is a possible solution. We furthermore highlight the importance of recognizing and valuing the diverse manners of experiencing and interacting with the world, the promotion of diverse well-being, and the facilitation of innovation and creativity. Thus, we conclude that the 3E-Cognition perspective offers a groundbreaking approach to understanding and supporting neurodiversity: by embracing the inherent interconnectedness of the brain, body, and environment, we can create a more inclusive and supportive world.


Assuntos
Cognição , Neurociências , Humanos , Encéfalo/fisiologia , Cognição/fisiologia , Meio Ambiente , Neurociências/métodos
2.
Br J Psychiatry ; 224(4): 127-131, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38362636

RESUMO

BACKGROUND: There are increasing calls for neurodivergent peoples' involvement in research into neurodevelopmental conditions. So far, however, this has tended to be achieved only through membership of external patient and public involvement (PPI) panels. The Regulating Emotions - Strengthening Adolescent Resilience (RE-STAR) programme is building a new participatory model of translational research that places young people with diagnoses of attention-deficit hyperactivity disorder (ADHD) and autism at the heart of the research team so that they can contribute to shaping and delivering its research plan. AIMS: To outline the principles on which the RE-STAR participatory model is based and describe its practical implementation and benefits, especially concerning the central role of members of the Youth Researcher Panel (Y-RPers). METHOD: The model presented is a culmination of a 24-month process during which Y-RPers moved from advisors to co-researchers integrated within RE-STAR. It is shaped by the principles of co-intentionality. The account here was agreed following multiple iterative cycles of collaborative discussion between academic researchers, Y-RPers and other stakeholders. RESULTS: Based on our collective reflections we offer general guidance on how to effectively integrate young people with diagnoses of ADHD and/or autism into the core of the translational research process. We also describe the specific theoretical, methodological and analytical benefits of Y-RPer involvement in RE-STAR. CONCLUSIONS: Although in its infancy, RE-STAR has demonstrated the model's potential to enrich translational science in a way that can change our understanding of the relationship between autism, ADHD and mental health. When appropriately adapted we believe the model can be applied to other types of neurodivergence and/or mental health conditions.


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade , Transtorno do Espectro Autista , Transtorno Autístico , Transtornos Globais do Desenvolvimento Infantil , Criança , Adolescente , Humanos , Transtorno do Deficit de Atenção com Hiperatividade/diagnóstico , Transtorno do Espectro Autista/psicologia , Ciência Translacional Biomédica
3.
Compr Psychiatry ; 130: 152461, 2024 04.
Artigo em Inglês | MEDLINE | ID: mdl-38335571

RESUMO

BACKGROUND: ADHD research has had a clear focus on symptoms, their negative consequences and the treatment of ADHD. However, previous qualitative research found that people with a diagnosis of ADHD also self-report to experience strengths related to their ADHD. This is one of the first quantitative studies to investigate multiple self-reported strengths in relation to ADHD traits in a general population sample. Therefore, our aim was to investigate the relationship between multiple self-reported strengths with ADHD traits in the general population using quantitative measures. METHODS: Our sample consisted of individuals from the general population in the UK, aged 18-60, n = 694. Next to assessing ADHD traits, we collected data on ten instruments investigating strengths that in qualitative research were reported to be related to ADHD. Correlation analysis (primary) was supplemented by factor and network analyses (exploratory). RESULTS: We found positive correlations between ADHD traits and hyperfocus, sensory processing sensitivity, and cognitive flexibility. CONCLUSIONS: People with more ADHD traits score higher on several strengths, for other strengths we were not able to show a positive correlation in this population-bases sample. Information on strengths may aid people with elevated ADHD traits cope with their condition, and has potential to provide new angles for treatment.


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade , Humanos , Autorrelato , Transtorno do Deficit de Atenção com Hiperatividade/diagnóstico , Transtorno do Deficit de Atenção com Hiperatividade/epidemiologia , Transtorno do Deficit de Atenção com Hiperatividade/psicologia , Fenótipo , Pesquisa Qualitativa , Sensação
4.
Dyslexia ; 30(3): e1775, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38837597

RESUMO

Dyslexia, a neurocognitive difference characterised by poor word-reading, is associated with elevated risk for internalising (e.g., anxiety) and externalising (e.g., aggression) mental health concerns, the reasons are largely unknown. We took a neurodiversity perspective and explored whether school-connectedness mediated these associations. A total of 283 primary school children (87 with dyslexia) and their caregivers (95.4% mothers) completed a battery of well-validated connectedness and mental health measures. Two mediation models (one for child-report and one for caregiver-report) tested direct and indirect effects of dyslexia on anxiety, depression and conduct problems via several domains of school-connectedness. After controlling for gender and neurodevelopmental conditions other than dyslexia, there were no direct effects of dyslexia on child- or caregiver-reported internalising symptoms or child-reported conduct problems. Dyslexia was associated with child and caregiver reported anxiety, depression and conduct problems via low levels of school (but not teacher, friend or peer) connectedness. Findings highlight school-connectedness as an important intervention target for the mental health of children with dyslexia. Future research is needed to test associations between dyslexia, school-connectedness and mental health over time.


Assuntos
Ansiedade , Depressão , Dislexia , Instituições Acadêmicas , Humanos , Feminino , Masculino , Criança , Ansiedade/psicologia , Depressão/psicologia , Transtorno da Conduta , Saúde Mental
5.
Sociol Health Illn ; 46(5): 1023-1053, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38568719

RESUMO

The neoliberal and biomedical 'good caregiver' discourse neglects the many facets of everyday information work that parents of children with special needs are required to do as they seek, receive and share information concerning their children's health and wellbeing. Along with time and skills, one such neglected facet is emotion work, the management of feelings in relation to societal norms. The purpose of this article is to explore emotion work, as a facet in parental health information work in the care and education sector, among mothers of neurodivergent children. Our analysis draws on interviews with 50 Swedish mothers of neurodivergent children. We present three primary insights. 1. Emotion work, on the self as well as on others, is pivotal to the information work that the mothers carry out in the education and care sector as they strive to ameliorate their children's situation. 2. Contested diagnoses, such as diagnoses associated with neurodivergent conditions, result in intense parental information and emotion work. 3. Fragmented and complex education and care systems, alongside traditional gender structures, compel mothers to undertake extensive information and emotion work.


Assuntos
Emoções , Mães , Humanos , Feminino , Mães/psicologia , Suécia , Adulto , Criança , Entrevistas como Assunto , Pré-Escolar , Masculino , Pesquisa Qualitativa , Transtornos do Neurodesenvolvimento/psicologia , Cuidadores/psicologia
6.
Int J Lang Commun Disord ; 59(4): 1505-1516, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38275081

RESUMO

BACKGROUND: Neurodiversity is increasingly discussed in relation to autism research and practice. However, there is a lack of scholarship concerning the neurodevelopmental condition of Developmental Language Disorder (DLD) and the neurodiversity movement. While this movement may hold opportunities for the DLD community, the application of the concept of neurodiversity to DLD research and practice needs consideration, as DLD and autism have very different levels of public and professional awareness and understanding. AIMS: In this article, we discuss what the concept of neurodiversity and the associated neurodiversity movement could mean for DLD research and practice. We aim to critique some assumptions that may arise from the application of neurodiversity principles (or assumed principles) to the field of DLD. METHODS: This is a discussion paper, drawing on the personal experiences and reflections of the author team. MAIN CONTRIBUTIONS: We make the case for why DLD should be included in discussions about neurodivergence and outline considerations for doing so, and why some issues and applications may be particular to DLD. We outline points of similarity and contrast with autism in relation to our understanding of neurodiversity. We consider the issues around diagnosis and terminology and urge practitioners to continue to diagnose DLD using currently agreed terminology, so as not to undermine recent awareness efforts. We note that a neurodiversity-informed perspective challenges us to offer interventions that operate at the level of our environments, not just at the level of an individual. Indeed, neurodiversity offers a platform to argue for better rights and more inclusive spaces in mental health settings, education and work for children and adults with DLD. CONCLUSIONS: DLD should be considered from a neurodiversity-informed perspective, and it is our hope that this will lead to neurodiversity-affirming practice that will afford young people with DLD better understanding from members of the public and the professionals who work with them. Further work is needed to better support children, young people and adults with DLD to have a voice in the neurodiversity movement. WHAT THIS PAPER ADDS: What is already known on the subject Neurodiversity approaches are increasingly being taken up in research and practice in relation to autism, meaning that our understanding of autism and how autistic people are supported is increasingly drawing on the principles of neurodiversity. However, autism is not the only neurodivergent population. Developmental Language Disorder (DLD) is another neurodevelopmental condition; however, relative to autism, DLD has lower awareness amongst professionals and the public. There has been no scholarship that has examined DLD through the lens of neurodiversity, or considered the application of neurodiversity-affirming approaches to DLD. What this paper adds to existing knowledge In this paper, we examine what the neurodiversity movement means for DLD research and practice. In particular, we consider what neurodiversity in the field of autism might teach us about the application of neurodiversity in the field of DLD, and highlight where we believe there are important differences between the two populations. We reflect on what neurodiversity means for intervention, diagnosis, terminology and championing the need for accessibility, especially with regard to mental health support, education and employment. What are the potential or actual clinical implications of this work? Neurodiversity highlights the need to consider interventions at the level of an individual's environment (e.g., how can we make this space more inclusive?) as well as interventions operating at the level of the individual themselves (e.g., interventions focusing on an individual's language skills). We challenge the notion that neurodiversity-affirming approaches mean not diagnosing DLD or changing DLD's terminology: we argue that this is not in the spirit of the original neurodiversity movement, but also that for a condition with such low public awareness, these actions could do more harm than good for families affected by DLD. We call for more in-depth scholarship and discussion around the application of neurodiversity approaches to DLD and argue that the neurodiversity movement offers an important opportunity to raise better awareness and understanding of DLD in multiple sectors, including (but not limited to) mental health, education and employment.


Assuntos
Transtornos do Desenvolvimento da Linguagem , Humanos , Transtornos do Desenvolvimento da Linguagem/diagnóstico , Transtornos do Desenvolvimento da Linguagem/psicologia , Criança , Terminologia como Assunto , Transtorno Autístico/diagnóstico , Transtorno Autístico/psicologia , Transtorno do Espectro Autista/diagnóstico , Transtorno do Espectro Autista/psicologia
7.
BMC Med Educ ; 24(1): 896, 2024 Aug 20.
Artigo em Inglês | MEDLINE | ID: mdl-39160552

RESUMO

BACKGROUND: Dyscalculia is defined as a specific learning difference or neurodiversity. Despite a move within postgraduate medical education (PGME) towards promoting inclusivity and addressing differential attainment, dyscalculia remains an unexplored area. METHODS: Using an interpretivist, constructivist, qualitative methodology, this scoping study explores PGME educators' attitudes, understanding and perceived challenges of supporting doctors in training (DiT) with dyscalculia. Through purposive sampling, semi-structured interviews and reflexive thematic analysis, the stories of ten Wales-based PGME educators were explored. RESULTS: Multiple themes emerged relating to lack of educator knowledge, experience and identification of learners with dyscalculia. Participants' roles as educators and clinicians were inextricably linked, with PGME seen as deeply embedded in social interactions. Overall, a positive attitude towards doctors with dyscalculia underpinned the strongly DiT-centred approach to supporting learning, tempered by uncertainty over potential patient safety-related risks. Perceiving themselves as learners, educators saw the educator-learner relationship as a major learning route given the lack of dyscalculia training available, with experience leading to confidence. CONCLUSIONS: Overall, educators perceived a need for greater dyscalculia awareness, understanding and knowledge, pre-emptive training and evidence-based, feasible guidance introduction. Although methodological limitations are inherent, this study constructs novel, detailed understanding from educators relating to dyscalculia in PGME, providing a basis for future research.


Assuntos
Discalculia , Docentes de Medicina , Pesquisa Qualitativa , Humanos , Docentes de Medicina/psicologia , Educação de Pós-Graduação em Medicina , Atitude do Pessoal de Saúde , Masculino , Feminino , País de Gales
8.
J Occup Rehabil ; 2024 Feb 08.
Artigo em Inglês | MEDLINE | ID: mdl-38326702

RESUMO

PURPOSE: Inclusive recruitment and employment of autistic adults has garnered recent attention in research and policy. To address a need to better understand the experiences of autistic adults in relation to paid employment, we asked the literature, what are the experiences of autistic individuals (from their perspectives) in competitive employment? METHODS: A scoping review was conducted to summarize and consolidate the findings across research to date. A systematic search and screen of the literature resulted in 32 relevant studies. FINDINGS: Key study characteristics, participant demographics, and thematic findings are shared, along with considerations and recommendations for future research and practice. Six key themes were described by autistic participants across the 32 studies: (1) accessibility of employment, (2) workplace relationships and communication, (3) role alignment, (4) sensory needs and/or mental health, (5) colleagues' knowledge and beliefs about autism, and (6) family and community context. CONCLUSION: It is anticipated that the results of this review will be beneficial for stakeholders engaging in discussions and decision-making across research and employment contexts.

9.
Adapt Phys Activ Q ; : 1-18, 2024 Jun 28.
Artigo em Inglês | MEDLINE | ID: mdl-38942419

RESUMO

Little is known about how adults with attention-deficit/hyperactivity disorder (ADHD) experience exercise, resulting in a lack of recommendations for supporting this population. We aimed to explore how adults with ADHD experience exercise as a management tool before and after diagnosis and how and why individuals experience issues related to exercise dependence. Fifteen active adults with a diagnosis of ADHD participated in semistructured interviews. Three overarching themes were identified: (a) exercise as a necessity for ADHD, reflecting the need to exercise before a formal ADHD diagnosis, and use of exercise as a management tool postdiagnosis; (b) goals and achievements to live by, reflecting how exercise patterns revolved around a need to make progress toward targets; and (c) activity or exercise: a roller coaster journey, covering the ups and downs of exercise journeys. This article highlights the importance of exercise for adults to manage ADHD and how this can be encouraged and supported.

10.
Hist Psychiatry ; : 957154X241248261, 2024 Apr 28.
Artigo em Inglês | MEDLINE | ID: mdl-38679954

RESUMO

After his 1944 thesis, Asperger continued to write about autism, but none of these texts have been translated. At a time when autism spectrum disorder faces many challenges (e.g. the nature and measurement of autism), this text tells us more about the particular population that Asperger worked with. He describes sensitive, intelligent, creative and rational children, a far cry from the Wing triad. Moreover, 'Asperger's Syndrome' was introduced after he had died, was included in the DSM-IV in 1994 and was omitted from the DSM-5 in 2013. The question posed by this last text, written before his death, is whether Asperger's descriptions of autistic children are really part of the autism spectrum disorder or whether they are outside the pathological field.

11.
Child Fam Soc Work ; 28(4): 960-970, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-38505819

RESUMO

Young people who are currently or were previously in state care have consistently been found to have much higher rates of mental health and neurodevelopmental difficulties than the general youth population. While a number of high-quality reviews highlight what research has been undertaken in relation to the mental health of young people with care experience and the gaps in our knowledge and understanding, there is, until now, no consensus, so far as we aware, as to where our collective research efforts should be directed with this important group. Through a series of UK wide workshops, we undertook a consultative process to identify an agreed research agenda between those with lived experience of being in care (n = 15), practitioners, policy makers and researchers (n = 59), for future research regarding the mental health of young people with care experience, including those who are neurodiverse/have a neurodevelopmental difficulty. This consensus statement identified 21 foci within four broad categories: how we conceptualize mental health; under-studied populations; under-studied topics; and underused methodologies. We hope that those who commission, fund and undertake research will engage in this discussion about the future agenda for research regarding the mental health of young people with care experience.

12.
Autism ; 28(6): 1591-1594, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38470140

RESUMO

LAY ABSTRACT: This letter discusses the origins of the concept and theory of neurodiversity. It is important to correctly attribute concept and theories to the people who developed them. For some time, the concept of neurodiversity has primarily been attributed to one person, Judy Singer. We consider the available evidence and show that the concept and theory in fact has multiple origins. We draw particular attention to recent archival findings that show the concept of 'neurological diversity' was being used years earlier than previously thought. 'Neurodiversity' means the same thing as 'neurological diversity' and does not change the theory in any way. We conclude that both the concept of neurological diversity or neurodiversity, and the body of theory surrounding it, should be understood as having been collectively developed by neurodivergent people.


Assuntos
Teoria Psicológica , Humanos , História do Século XX , Neurociências
13.
Cortex ; 172: 204-221, 2024 03.
Artigo em Inglês | MEDLINE | ID: mdl-38354470

RESUMO

Executive function, an umbrella term used to describe the goal-directed regulation of thoughts, actions, and emotions, is an important dimension implicated in neurodiversity and established malleable predictor of multiple adult outcomes. Neurodevelopmental differences have been linked to both executive function strengths and weaknesses, but evidence for associations between specific profiles of executive function and specific neurodevelopmental conditions is mixed. In this exploratory study, we adopt an unsupervised machine learning approach (self-organising maps), combined with k-means clustering to identify data-driven profiles of executive function in a transdiagnostic sample of 566 neurodivergent children aged 8-18 years old. We include measures designed to capture two distinct aspects of executive function: performance-based tasks designed to tap the state-like efficiency of cognitive skills under optimal conditions, and behaviour ratings suited to capturing the trait-like application of cognitive control in everyday contexts. Three profiles of executive function were identified: one had consistent difficulties across both types of assessments, while the other two had inconsistent profiles of predominantly rating- or predominantly task-based difficulties. Girls and children without a formal diagnosis were more likely to have an inconsistent profile of primarily task-based difficulties. Children with these different profiles had differences in academic achievement and mental health outcomes and could further be differentiated from a comparison group of children on both shared and profile-unique patterns of neural white matter organisation. Importantly, children's executive function profiles were not directly related to diagnostic categories or to dimensions of neurodiversity associated with specific diagnoses (e.g., hyperactivity, inattention, social communication). These findings support the idea that the two types of executive function assessments provide non-redundant information related to children's neurodevelopmental differences and that they should not be used interchangeably. The findings advance our understanding of executive function profiles and their relationship to behavioural outcomes and neural variation in neurodivergent populations.


Assuntos
Função Executiva , Transtornos Mentais , Criança , Adulto , Feminino , Humanos , Adolescente , Função Executiva/fisiologia , Cognição , Emoções , Escolaridade
14.
Cortex ; 176: 234-236, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38580533

RESUMO

This Viewpoint explores challenges within the neurodiversity framework, with a particular focus on autism, and discusses three critical aspects: the risk of epistemic injustice, the balance between over and undermedicalization, and the terminological complexities associated with the "neuro-" prefix. It underscores the importance of a balanced approach that avoids overmedicalization while providing essential support, addresses concerns about the indiscriminate use of "neurodiverse", questions the terminology on neurodiversity, and suggests considering a broader term like "biopsychosocial diversity". Ultimately, this Viewpoint advocates for a measured approach to neurodiversity, emphasizing historical context and a diverse perspective to foster collaboration between cognitive science and behavior research.


Assuntos
Medicalização , Humanos , Transtorno Autístico/psicologia , Conhecimento , Justiça Social
15.
Autism Res ; 17(3): 459-466, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38233966

RESUMO

Perspectives on autism and psychiatric conditions are affected by a mix of scientific and social influences. Evolutionary psychiatry (EP) and the neurodiversity movement are emerging paradigms that reflect these distinct influences, with the former grounded in scientific theory and the latter driven by political and social principles. Despite their separate foundations, there is a significant overlap between EP and neurodiversity that has not been explored. Specifically, both paradigms reframe disorders as natural cognitive differences rather than disease; expand the concept of "normal" beyond that implied in modern psychiatry; focus on relative strengths; recognize that modern environments disadvantage certain individuals to cause functional impairment; emphasize cognitive variation being socially accommodated and integrated rather than treated or cured; and can help reduce stigmatization. However, in other ways, they are distinct and sometimes in conflict. EP emphasizes scientific explanation, defines "dysfunction" in objective terms, and differentiates heterogenous cases based on underlying causes (e.g. autism due to de novo genetic mutations). The neurodiversity movement emphasizes social action, removes barriers to inclusion, promotes inclusive language, and allows unrestricted identification as neurodivergent. By comparing and contrasting these two approaches, we find that EP can, to some extent, support the goals of neurodiversity. In particular, EP perspectives could be convincing to groups more responsive to scientific evidence and help achieve a middle ground between neurodiversity advocates and critics of the movement.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Transtornos Globais do Desenvolvimento Infantil , Psiquiatria , Criança , Humanos , Transtorno Autístico/psicologia
16.
Autism Res ; 17(4): 812-823, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38323512

RESUMO

Camouflaging (using (un)conscious strategies to appear as non-autistic) is thought to be an important reason for late autism diagnoses and mental health difficulties. However, it is unclear whether only autistic people camouflage or whether people with other neurodevelopmental or mental health conditions also use similar camouflaging strategies. Therefore, in this preregistered study (AsPredicted: #41811) study, we investigated if adults with attention-deficit/hyperactivity-disorder (ADHD) also camouflage. Adults aged 30-90 years filled in the Dutch Camouflaging Autistic Traits Questionnaire (CAT-Q-NL), the ADHD Self-Report (ADHD-SR) and the Autism Spectrum Quotient (AQ). We investigated differences in camouflaging between adults with ADHD, autism, and a comparison group in an age and sex-matched subsample (N = 105 per group). We explored if autism and ADHD traits explained camouflaging levels in adults with an autism and/or ADHD diagnosis (N = 477). Adults with ADHD scored higher on total camouflaging and assimilation subscale compared to the comparison group. However, adults with ADHD scored lower on total camouflaging, and subscales compensation and assimilation than autistic adults. Autism traits, but not ADHD traits, were a significant predictor of camouflaging, independent of diagnosis. Thus, camouflaging does not seem to be unique to autistic adults, since adults with ADHD also show camouflaging behavior, even though not as much as autistic adults. However, as the CAT-Q-NL specifically measures camouflaging of autistic traits it is important to develop more general measures of camouflaging, to compare camouflaging more reliably in people with different mental health conditions. Furthermore, focusing on camouflaging in adults with ADHD, including potential consequences for late diagnoses and mental health seems a promising future research avenue.


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade , Transtorno do Espectro Autista , Transtorno Autístico , Adulto , Humanos , Transtorno Autístico/psicologia , Transtorno do Deficit de Atenção com Hiperatividade/complicações , Transtorno do Deficit de Atenção com Hiperatividade/epidemiologia , Transtorno do Deficit de Atenção com Hiperatividade/diagnóstico , Transtorno do Espectro Autista/psicologia , Autorrelato , Inquéritos e Questionários
17.
Autism ; : 13623613241248713, 2024 May 13.
Artigo em Inglês | MEDLINE | ID: mdl-38741516

RESUMO

LAY ABSTRACT: Autism research is changing. Autistic activists and researchers want Autistic people in the community to have more of a say about what is researched and how. But we haven't asked people in the community what they think. This study used the information obtained from 55 community members, including Autistic people, their families, and professionals working with Autistic people, from an existing study on their priorities for autism research. We re-looked at what was said to see if we could understand community members' views and experiences of autism research. People agreed strongly that research can play a powerful role in shaping good Autistic lives. They also felt that big changes were needed for research to do this. Some of these changes were that researchers should stop thinking about autism narrowly and in a negative way, where Autistic people are seen as the problem. Researchers need to think more about how to improve systems, experiences and how other people respond to Autistic people. They also want the autism community to be more involved in what is researched and how it is researched. The findings from our study here highlight the potential for research to be positive when Autistic people and their families are listened to, approached with understanding, and are respected and valued as individuals in the research process.

18.
Healthcare (Basel) ; 12(9)2024 Apr 27.
Artigo em Inglês | MEDLINE | ID: mdl-38727469

RESUMO

Assessment of restricted, repetitive behaviors (RRB) in autism evaluations often assumes that these behaviors negatively impact the individual. Qualitative studies of first-person accounts indicate the negative impact of the stigma associated with RRBs but also provide insights into the positive aspects. The current study explores how framing response options as negative (i.e., level of problem associated with occurrence) or positive (i.e., level of benefit associated with occurrence) affects RRB self-reports in autistic adults. Sixty-six autistic adults aged 18-59 filled out the Repetitive Behavior Scale-Revised (RBS-R) and a modified RBS-R+, assessing problems and benefits of reported behaviors, respectively. There was a moderate to strong correlation between the forms, each assessing problems and benefits in terms of the number of behaviors endorsed (r = 0.746) and the levels of benefits and problems (r = 0.637). Autistic adults reported a higher number of RRBs in the form that assessed problems, but the number of behaviors was comparable between the forms when counting in the response option of the occurrence of behavior without having a benefit. Despite some variability in the level of problems and the benefits across the subdomains of RRB, autistic adults largely rated comparable levels of associated benefits and problems, highlighting the complexity of RRBs as having both positive and negative impacts. Future screening and diagnostic tools for adults should aim to assess both positive and negative aspects of autistic features to afford a more nuanced understanding of individual experiences while still yielding diagnostically relevant information. Qualitative studies are needed to better understand the complex experiences associated with these behaviors; however, it may be important to ensure that options for endorsement of behaviors without a specific benefit are also needed to ensure some behaviors (e.g., self-injurious behaviors) are not missed.

19.
Healthcare (Basel) ; 12(11)2024 May 24.
Artigo em Inglês | MEDLINE | ID: mdl-38891152

RESUMO

BACKGROUND: A gap exists in measures available to assess levels of motivation, desire, and value associated with connecting with others. Moreover, few social connection scales have been developed with a goal of including autistic individuals in the sample to create a measure that has utility across neurodiverse populations. This study aims to develop a measure to assess different facets of social connection that is valid among both autistic and non-autistic adults. METHODS: The sample consisted of 200 participants recruited online. Participants completed an initial set of 35 items. Exploratory factor analyses and confirmatory factor analyses were performed. Four-factor models were produced by the EFAs. RESULTS: Item reduction resulted in the development of two 8-item scales: the Connections with Others Scale (CWOS) intended for the general population and the CWOS-Autistic Version (CWOS-AV) intended for autistic populations (CWOS-AV). Autistic participants had significantly greater motivation/desire to connect with others compared to non-autistic participants (t(195) = 3.39; p < 0.001). CONCLUSIONS: These measures will allow for greater ability to assess the motivation to connect with others, resulting in improved ability to produce research that clarifies theories and describes psychological phenomena.

20.
Curr Pharm Teach Learn ; 16(6): 460-464, 2024 06.
Artigo em Inglês | MEDLINE | ID: mdl-38582640

RESUMO

BACKGROUND: Effective communication with patients and colleagues is key to a pharmacist's ability to provide effective person-centered care. Neurodivergent patients face many barriers when interacting with health professionals; increased awareness and understanding are therefore paramount to the pharmacist's role. This paper describes an innovative teaching partnership between a school of pharmacy and an inclusive theater company which aims to develop awareness and skills of undergraduate pharmacy students in relation to communicating with patients with autism and/or learning disabilities. EDUCATIONAL ACTIVITY: Forum theater and role-plays were used to complement existing communication skills teaching in Years two and four of the undergraduate MPharm (Master of Pharmacy) program. The sessions were designed and delivered in partnership between academic teaching staff and a theater company of neurodivergent actors. An online evaluation form was used to obtain student feedback on these sessions (two Likert-style questions and three open format questions). CRITICAL ANALYSIS OF THE EDUCATIONAL ACTIVITY: Of the 241 students who attended a session in 2021, 70 (29%) provided feedback. Feedback was positive, with 99% of respondents finding the session useful. Students spoke about how they found the sessions supportive and enlightening, helping them to reflect on their own communication skills. As a result, the teaching has been developed and now expanded through all years of the undergraduate program. While conscious of challenges such as funding and finding the right partner, the authors recommend this rewarding initiative to fellow academics.


Assuntos
Comunicação , Educação em Farmácia , Estudantes de Farmácia , Humanos , Educação em Farmácia/métodos , Educação em Farmácia/normas , Estudantes de Farmácia/estatística & dados numéricos , Estudantes de Farmácia/psicologia , Currículo/tendências , Currículo/normas , Inquéritos e Questionários
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