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Background: Play is important for mental health and well-being. Descriptions of autistic play have typically focused on "deficits" and are based on comparisons to neurotypical "norms". According to the neurodiversity paradigm, it is important that autistic voices are highlighted and that difficulties, differences, and strengths are explored. With this in mind, we designed the present study to focus on the experiences and perspectives of autistic people concerning the topic of autistic play. Methods: We conducted a consultation with autistic stakeholders, as well as with parents and teachers of autistic individuals to help us design the study and interview questions. We used semi-structured interviews with 22 autistic adults aged 18-57 years (clinically confirmed diagnosis, n = 21; self-diagnosed, n = 1) who live in the United Kingdom. We analyzed the data using interpretative phenomenological analysis to identify themes. Results: We found important commonalities and differences in the ways that socialization in play, imaginary play, and flow (a state involving intense focus on the play) are experienced. Autistic adults discussed the importance of both solitary play and social play, with solitary play having an important recuperative function. They also reported preferences for parallel play and playing with similar autistic people. They also discussed imaginary play experiences, including social role-play and grounded-in-reality play, and the dual nature of flow experiences during play. Conclusions: The findings of this study contrast with deficit-focused understandings of autistic play and build on neurodiversity-informed studies. We highlight, for example, the importance of considering the different circumstances under which solitary play or social play are preferred, as well as the importance of taking an individual approach to play. We encourage wider understanding and acceptance of these play preferences and experiences to support autistic people's well-being.
Why is this an important issue? Usually, descriptions of autistic play are negative and are based on what non-autistic people think autistic play should be like. We think that it is important to challenge this by exploring autistic play in a more balanced way and focusing on what autistic people say about their play. What was the purpose of this study? We wanted to find out how autistic adults experience play. We were also interested in how they think their play is different from non-autistic play. What did the researchers do? We asked autistic and non-autistic people to help us design our study and interview questions. We interviewed 22 autistic adults and asked them about their play now or when they were younger. We then analyzed the data using a qualitative method called interpretative phenomenological analysis. This meant that we could identify themes covering the group's views and experiences. What were the results of the study? We found a range of play experiences and different ways in which some autistic adults play. Many autistic adults talked about the importance of both playing by themselves and with others, with solitary play described as being recuperating. Some described preferring play that involves playing nearby other people without necessarily interacting with them directly. Many preferred to play with similar autistic people. Several autistic adults discussed engaging in imaginary play activities such as role-play and preferring play that is based on reality. They also described the benefits and limitations of something called a flow state, which involves intense focus on the play. What do these findings add to what was already known? Our findings highlight how autistic adults like to play and different ways some autistic adults experience play. For example, we highlight the situations where solitary play and social play are preferred, and the importance of understanding that different people like to play in different ways. What are potential weaknesses in the study? We did not involve autistic people beyond consultation. We think that a better understanding of autistic play can come from using approaches with greater autistic involvement, such as co-production. Most of our participants were White, highly educated, and primarily communicate using speech. We do not know if other autistic people would experience play in a similar way. How will these findings help autistic adults now or in the future? Understanding and acceptance of the ways in which autistic people like to play can help support autistic people's well-being. In practice, this involves limiting the use of supports that aim to make autistic people's play "normal" and instead encouraging authentic autistic play.
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A scoping review of the literature was undertaken using JBI guidelines to map the evidence of parent-led therapy (PLT) for young autistic children (≤ 6 years) raised in bilingual environments. Reviewers used Covidence to screen located sources. Sixteen papers met inclusion criteria. A strong acceleration of reports of PLT for young autistic children measured in bilingual environments was observed, with 93.8% of papers (n = 15) published since 2015. Reporting of participants' language environments (home language(s)/L1s and societal language(s)/L2s) was inconsistent. A large majority of these studies, 87.5% (n = 14) were conducted in North America or in collaboration with a North American institution. Diverse PLT programs and methodologies were identified. There is variation in demographic information collected and outcomes reported. Evidence gaps in the literature are identified and the value of undertaking systematic review on this topic is considered. This scoping review points to the necessity of further empirical research and practice that centres parents in early and specific support for autistic children raised in bilingual environments. Suggestions for improving reporting standards of language profiles are provided.
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LAY ABSTRACT: Play is often included in autism diagnostic assessments. These assessments tend to focus on negatives and how people who are not autistic interpret observable behaviours. It is important to take a neurodiversity-affirmative assessment approach. This involves focusing on what autistic people say and looking at strengths and needs. We wanted to find out how autistic adults experience diagnostic assessments that include play. We asked autistic and non-autistic people to help us design our study and interview questions. We then interviewed 22 autistic adults to find out what they think about the use of play in assessments. We used a qualitative method called interpretative phenomenological analysis to analyse the data. Autistic adults told us about the different ways play was included in their diagnostic assessments. For example, some completed a diagnostic tool called the Autism Diagnostic Observation Schedule. Autistic adults also talked about the importance of considering how autistic people are different to each other. For example, we found that play may not be useful for assessing women or girls who mask. This suggests that professionals should adopt a personalised approach to diagnostic assessments that use play catering to each person's needs. Our findings also suggested that professionals should assess strengths and differences as well as needs.
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Aim: This study explores how bilingual parents of autistic children made language decisions for their families, how the event of the SARS-CoV-2 pandemic and subsequent lockdown impacted the communication environment of their households, and whether these experiences affected their language habits. Method: Semi-structured interviews were conducted with five bilingual parents of autistic children who lived through lockdown in France. Data were analysed using interpretative phenomenological analysis. Demographic and background information was collected using an adapted version of the Questionnaire for Parents of Bilingual Children. Results: Participants reported conflicting advice given by a range of practitioners. Parents expressed differing beliefs about the impact of language choices on their children. Parents described active engagement with their children's home-learning as generally positive. Parents identified an increase in children's exposure to their first language during the lockdown. Parents reported an increase in children's overall communication abilities. Conclusion: Parents believed that their children's positive communication development during lockdown was related to increased exposure to their first language(s), and direct involvement in their children's learning programs.
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BACKGROUND: Minimally invasive tissue sampling (MITS) is an alternative to complete autopsy for determining causes of death. Multiplex molecular testing performed on MITS specimens poses challenges of interpretation, due to high sensitivity and indiscriminate detection of pathogenic, commensal, or contaminating microorganisms. METHODS: MITS was performed on 20 deceased children with respiratory illness, at 10 timepoints up to 88 hours postmortem. Samples were evaluated by multiplex molecular testing on fresh tissues by TaqMan® Array Card (TAC) and by histopathology, special stains, immunohistochemistry (IHC), and molecular testing (PCR) on formalin-fixed, paraffin-embedded (FFPE) tissues. Results were correlated to determine overall pathologic and etiologic diagnoses and to guide interpretation of TAC results. RESULTS: MITS specimens collected up to 3 days postmortem were adequate for histopathologic evaluation and testing. Seven different etiologic agents were detected by TAC in 10 cases. Three cases had etiologic agents detected by FFPE or other methods and not TAC; 2 were agents not present on TAC, and 2 were streptococci that may have been species other than those present on TAC. Result agreement was 43% for TAC and IHC or PCR, and 69% for IHC and PCR. Extraneous TAC results were common, especially when aspiration was present. CONCLUSIONS: TAC can be performed on MITS up to 3 days after death with refrigeration and provides a sensitive method for detection of pathogens but requires careful interpretation in the context of clinicoepidemiologic and histopathologic findings. Interpretation of all diagnostic tests in aggregate to establish overall case diagnoses maximizes the utility of TAC in MITS.
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Manejo de Espécimes , Autopsia , Criança , Humanos , Imuno-HistoquímicaRESUMO
A growing body of evidence suggests that bilingual exposure does not negatively impact children on the autism spectrum. This study sought to illuminate parents' perceptions and choices regarding maintaining bilingualism in autism. Semi-structured interviews were conducted with 16 family members in England and Wales. Data were analysed using interpretative phenomenological analysis (IPA). Although parents expressed positive attitudes towards bilingualism, these views were not always congruent with their language practices. Instead, several factors influenced decisions about language maintenance in autism, including the severity of the child's autism, advice received, and the importance of English as the dominant societal language. This article calls for greater support for families in making language decisions that are suitable for the individual child and their family.
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Transtorno Autístico/psicologia , Tomada de Decisões/fisiologia , Multilinguismo , Pais/psicologia , Percepção/fisiologia , Adolescente , Adulto , Transtorno Autístico/diagnóstico , Criança , Inglaterra/epidemiologia , Feminino , Humanos , Masculino , País de Gales/epidemiologia , Adulto JovemRESUMO
BACKGROUND: With growing numbers of bilingual children on the autism spectrum in UK classrooms, the interaction between autism and bilingualism is becoming a pressing issue for practitioners, researchers and families. In this study, we report the school experiences of bilingual, autistic children in the UK through their own voice with focus on five aspects of their school life. METHOD: Using interpretative phenomenological analysis (IPA) as a methodological framework, semi-structured, computer-assisted interviews were conducted with 11 children aged 7 to 14 from across England and Wales. Interviews were carried out in English and took place in mainstream schools or the children's home, depending on their preference. RESULTS: Results indicate that, while children's school experiences vary widely, there were commonalities in this population's identity formation, including being bilingual, and their classroom experiences. Most notably, children educated in more multilingual environments (i.e. in schools with larger multilingual populations) expressed more positive views about multilingualism than those in more monolingual settings. In line with previous studies, limited social circles and classroom anxiety were present in participants' school experiences. IMPLICATIONS: The findings of this paper suggest that giving autistic children from bilingual backgrounds opportunities to explore their linguistic identities in the classroom may enhance their experiences of school. Further research should focus on parents' and practitioners' attitudes and perspectives towards the support available for this population.
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Sucesso Acadêmico , Transtorno do Espectro Autista , Relações Interpessoais , Idioma , Motivação , Multilinguismo , Instituições Acadêmicas , Meio Social , Adolescente , Arte , Criança , Inglaterra , Feminino , Humanos , Masculino , Matemática , Pesquisa Qualitativa , País de GalesRESUMO
Qualitative studies within autism research are gaining prominence, yet there is little evidence about the usefulness of particular qualitative approaches in reflecting the perspectives and experiences of autistic participants. This short report serves to introduce interpretative phenomenological analysis as one among a range of qualitative approaches to autism research. We argue that certain features of interpretative phenomenological analysis, including its commitment to an equality of voice and researcher reflexivity, may help to illuminate the experiences of autistic individuals. The procedures of interpretative phenomenological analysis are presented through the lens of 10 studies into autistic people's experiences, and a case is made for the suitability of this approach within qualitative autism research.
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Transtorno Autístico/psicologia , Pesquisa Qualitativa , Humanos , Entrevistas como Assunto , Reprodutibilidade dos TestesRESUMO
BACKGROUND: There is some evidence that acupuncture for pain and osteoarthritis (OA) of the knee is more than a placebo, and short term clinical benefits have been observed when acupuncture is compared to usual care. However there is insufficient evidence on whether clinical benefits of acupuncture are sustained over the longer term. In this study our key objectives are to inform the design parameters for a fully powered pragmatic randomised controlled trial. These objectives include establishing potential recruitment rates, appropriate validated outcome measures, attendance levels for acupuncture treatment, loss to follow up and the sample size for a full scale trial. METHODS: Potential participants aged over 50 with pain and osteoarthritis of the knee were identified from a GP database. Eligible patients were randomised to either 'acupuncture plus usual care' and 'usual care' alone, with allocation appropriately concealed. Acupuncture consisted of up to 10 sessions usually weekly. Outcome measures included Western Ontario and McMaster Universities (WOMAC) index with the sample size for a full scale trial determined from the variance. RESULTS: From the GP database of 15,927 patients, 335 potential trial participants were identified and invited to participate. After screening responses, 78 (23%) were identified as eligible and 30 patients who responded most promptly were randomised to 'acupuncture plus usual care' (15 patients) and 'usual care' alone (15 patients). Attendance for acupuncture appointments was high at 90% of the maximum. Although the trial was not powered to detect significant changes in outcome, the WOMAC pain index showed a statistically significant reduction at 3 months in the acupuncture group compared to usual care. This was not sustained at 12 months. The sample size for a fully powered two-arm trial was estimated to be 350. CONCLUSION: This pilot study provided the evidence that a fully powered study to explore the longer term impact of acupuncture would be worthwhile, and relevant design features for such a trial were determined. TRIAL REGISTRATION NUMBER: ISRCTN25134802.