Autistic adults' perspectives and experiences of diagnostic assessments that include play across the lifespan.

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.

Early years autism and bilingualism: An interpretative phenomenological analysis of parent perceptions during lockdown.

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.

Histopathology Is Key to Interpreting Multiplex Molecular Test Results From Postmortem Minimally Invasive Tissue Samples.

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.

Parental Perceptions and Decisions Regarding Maintaining Bilingualism in Autism.

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.

The school experiences of bilingual children on the autism spectrum: An interpretative phenomenological analysis.

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.

Using interpretative phenomenological analysis in autism research.

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.

Acupuncture for pain and osteoarthritis of the knee: a pilot study for an open parallel-arm randomised controlled trial.

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.