Not all people conform to what is socially construed as the norm and divergences should be expected. Neurodiversity is fundamental to the understanding of human behaviour and cognition. However, neurodivergent individuals are often stigmatised, devalued, and objectified. This position statement presents the perspectives of neurodivergent authors, the majority of whom have personal lived experiences of neurodivergence(s), and discusses how research and academia can and should be improved in terms of research integrity, inclusivity and diversity. The authors describe future directions that relate to lived experience and systematic barriers, disclosure, directions on prevalence, stigma, intersection of neurodiversity and open scholarship, and provide recommendations that can lead to personal and systematic changes to improve acceptance of neurodivergent individuals’ lived experiences within academia.
Background
Children with cleft lip and palate can continue to have problems producing clear speech after surgery. This can lead to social, emotional, and educational challenges. Typical treatment involves teaching children the correct tongue movements to produce speech sounds. This is known as articulation intervention. However, this intervention is challenging because the tongue is hidden from view and movements are difficult to see and describe. This pilot randomized control trial will try a new treatment, ultrasound visual biofeedback (U-VBF) versus standard articulatory intervention for children with cleft lip and palate, as comparison. Feasibility outcomes will be determined.
Methods/design
The Sonospeech project will enroll up to 40 children with cleft lip and palate aged 4;6 to 16 in a mixed-methods randomized controlled trial with blinded assessors. Children will receive either six sessions of U-VBF or articulation intervention. The primary goals of this pilot are to assess the feasibility and inform the design of a full-scale RCT of U-VBF for children with cleft speech characteristics. This will be achieved by determining the following outcome measures: recruitment/attrition rates; measures of pre-post follow-up completion; and acceptability of the randomization and interventions to families.
Discussion
Larger trials of speech interventions for children with cleft lip and palate are needed. This pilot/feasibility study will determine whether a larger randomized control trial comparing ultrasound and articulation interventions is feasible.
Trial registration
ISRCTN, ISRCTN17441953. Registered 22 March 2021. See Table 2 in Appendix 1 for all items.
This case study is based on experiences with an international meta-scientific project across different fields of research, assessing the use of Open Science practices in these fields, as well as individual researchers' reasons for not engaging in Open Science practices. The project was conducted by a cross-cultural and diverse group of researchers. In the present article, we share insights into potential pitfalls when conducting an international study, as well as possible solutions to overcome them. Specifically, we highlight various issues focusing on two key phases: designing an online survey with a focus on cross-cultural data collection, and recruiting a cross-cultural online sample of researchers.
Democratic] societies: Puithllam et al., 2022). Hitherto, neurodivergent perspectives -i.e. non-pathological variations in human brains (Walker, 2021)-are often overlooked and misunderstood within behavioural and cognitive sciences. It is common to encounter assumptions that anything outside of neurotypicality is at best dismissed as outlier data, or at worst, considered disadvantageous and in need of 'fixing ' (e.g., Gernsbacher & Pripas-Kapit, 2012). Such viewpoints hinder a broader understanding of human behaviour and cognition.Here, we call for more open and Participatory Research on neurodiversity through addressing the issue of power imbalance.
Neurodiverse perspectives can lead to a more representative scienceNeurodivergent individuals (e.g. autistic, dyslexics, dyspraxics…) are often considered objects of study rather than active research contributors, leading to erroneous and harmful assumptions about them (Elsherif et al., 2022). A proposed solution is the adoption of Participatory Research practices, defined as incorporating the views of neurodivergent individuals and their allies into the whole research cycle, from project design to dissemination and application of findings (Bourke, 2009;Fletcher-Watson et al., 2021). Participatory
The preprint is about how participatory research movement and neurodiversity movement can benefit the open scholarship movement and vice versa, leading to a more generalisable and accurate science of human behaviour and cognition.
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