Autistic children and adults who are non-verbal/minimally verbal or have an intellectual disability have often been excluded from Autism Spectrum Disorder research. Historical, practical and theoretical reasons for this exclusion continue to deter some researchers from work with this underserved population. We discuss why these reasons are neither convincing nor ethical, and provide strategies for dealing with practical issues. As part of a randomised controlled trial of an intervention for children with profound autism, we reflected as a multi-disciplinary team on what we had learnt from these children, their families and each other. We provide 10 strategies to overcome what appeared initially to be barriers to collecting data with this population. These hurdles and our solutions are organised by theme: interacting physically with children, how to play and test, navigating difficult behaviours, selecting suitable outcome measures, relating with parents, managing siblings, involving stakeholders, timing interactions, the clinician’s role in managing expectations, and recruitment. The aim of this article is to provide researchers with the tools to feel motivated to conduct research with children with profound autism and their families, a difficult but worthwhile endeavour. Many of these lessons also apply to conducting research with non-autistic children with intellectual disabilities. Lay abstract Autistic children who speak few or no words or who have an intellectual disability are the most in need of new understandings and treatments, but the most often left out of the research that can bring these benefits. Researchers perceive difficulties around compliance with instructions, testing, challenging behaviours and family stress. Although research with these children can indeed be difficult, their continuing exclusion is unethical and unacceptable. Drawing on our experiences testing a possible treatment for children with profound autism, we provide 10 practical guidelines related to (1) interacting physically, (2) combining play and testing, (3) responding to challenging behaviour, (4) finding suitable tests, (5) relationships with parents, (6) relationships with siblings, (7) involving stakeholders, (8) planning the testing times, (9) the role of the clinical supervisor and (10) recruiting and retaining participants. We hope that these guidelines will prepare and embolden other research teams to work with profoundly autistic children, ending their historical exclusion from research. These guidelines also could be useful for conducting research with children with intellectual disabilities.
Background:The deep inferior epigastric perforator (DIEP) flap is the gold standard for autologous breast reconstruction. One or two pedicles may be used. Our study is the first to compare unipedicled and bipedicled DIEP flaps on donor and recipient site outcomes in the same patient cohort. Methods: This is a retrospective cohort study comparing DIEP flap outcomes between 2019 and 2022. Results: There were 98 patients, categorized differently for recipient or donor site. The recipient groups were unilateral unipedicled (N = 52), bilateral unipedicled (N = 15), and unilateral bipedicled (N = 31), and donor site groups were unipedicled (N = 52) and bipedicled (N = 46, including bilateral unipedicled and unilateral bipedicled). Bipedicled DIEP flaps had 1.15 times greater odds of donor site complication (95% CI, 0.52-2.55). Adjusting for operative time that was longer in bipedicled DIEP flaps (P < 0.001), odds ratio decreased, and there was a lower probability of donor site complication for bipedicled flaps (OR, 0.84; 95% CI, 0.31-2.29). Odds of recipient area complication was not significantly different between groups. Unilateral unipedicled DIEP flaps had significantly higher rates of revisional elective surgery than unilateral bipedicled DIEP flaps (40.4% versus 12.9%; P = 0.029). Conclusions:We demonstrate no significant difference in donor site morbidity between unipedicled and bipedicled DIEP flaps. Bipedicled DIEP flaps do have slightly higher rates of donor site morbidity, which can be partly explained by longer operative times. There is no significant difference in recipient site complications, and bipedicled DIEP flaps can reduce rates of further elective surgery.
Background: Some autistic individuals with good compensatory skills may circumvent diagnosis, but still struggle with mentalizing. This missed or delayed identification can deprive them of the opportunity to receive necessary support and interventions. Thus, more sensitive assessment techniques are needed that are not susceptible to compensation. One such promising assessment, Southgate et al. (2007)'s anticipatory looking paradigm, has presented exciting yet inconclusive evidence surrounding spontaneous mentalizing in autism. The present study therefore aimed to advance this paradigm by addressing some alternative explanations and scrutinizing the claims that have been made in the literature, through implementing a multi-trial design with shorter trials, matched true-belief conditions, and both high and low inhibitory demand false-belief conditions. We also sought to inspect if any group differences were related to group-specific patterns of attention on key events. Methods: Seventeen autistic adults were compared with nineteen neurotypical adults on an adapted implicit mentalizing task and a well-established explicit mentalizing task. One-sample t -tests were used to compare performance to chance on the implicit task, a mixed-design ANOVA was conducted to examine main effects of group, time and belief and their interactions, and t -tests were used to further explore gaze patterns. Results: The two groups were comparable in the explicit mentalizing task, indicating sophisticated mentalistic reasoning; however, the autism group did not show anticipatory looking behaviour in the implicit mentalizing task, indicating that they struggled to mentalize the protagonist's beliefs. Surprisingly, there was no group difference in attention distribution during any of the key event. Limitations: Our true-belief conditions may also trigger mentalizing; future studies should therefore create a mentalizing-free baseline matched with the false-belief scenario. Conclusions: Our findings further document that although many autistic individuals perform well in explicit tasks, they struggle to spontaneously mentalize in implicit tasks, consistent with their everyday social difficulties. We ruled out some alternative theoretical explanations for this pattern of performance, leading to a better understanding of mentalizing difficulties. We also presented evidence that autistic adults may process information from social cues in the same way as neurotypical adults, but this information is not then used to update mental representations.
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