A strengths-based approach to autism research with siblings

Dr Georgia Pavlopoulou and Dr Dagmara Dimitriou from UCL Institute of Education, discuss their research into the experiences of both neurotypical and autistic siblings in adolescence. They explore the benefits of siblings as co-researchers and co-producers of the research, and the role siblings may play in educating their local communities about autism acceptance

Lonely Lockdown. Life for siblings of disabled children in the UK

In May 2020, Sibs conducted a survey of parents in order to better understand how the needs of siblings of disabled children were affected by lockdown. The first survey results made difficult reading: 75% of parents felt their sibling child’s mental health had worsened in lockdown; 50% of siblings were providing more care; a third were missing family and friends. Ten months on and in lockdown 3, we wanted to explore if and how things had changed for siblings of disabled children. Sibs Charity, in collaboration with University College London (UCL) researcher Dr Georgia Pavlopoulou launched a survey in February 2021 for 4 weeks to hear from parents about family experiences with a focus on siblings' day-to-day experiences and mental health needs. We also wanted to understand the nature of any school support, how the relationships between siblings and their brothers and sisters had been affected and what some of the greatest challenges were for children and young people. We hope the results of this survey will help to highlight the impact which lockdown has had on the majority of siblings and go on to inform a recovery response. Our findings suggest that the pandemic has had both an immediate and lasting effect on the mental health of many siblings who will need access to appropriate support from CAMHS services and schools in the months and years to come as part of a recovery plan

Sleep in Autistic Adults

A group of autistic adults were involved in the consultation process for this project, and they chose the name of the study – Sleep Focus Autistic. This name arose from a thread on social media that sparked a number of conversations amongst autistic adults on the topic of sleep, all of whom recognised it as a critical issue to explore and understand. Participants discussed their sleep experiences, perspectives and needs by engaging in dialogue with the researcher and with each other

In their own words, in their own photos: Adolescent females' siblinghood experiences, needs and perspectives growing up with a preverbal autistic brother or sister

Thus far very little research has focused on siblings in early adolescent years growing up with an autistic sibling. Adopting a community-based participatory research (CBPR) approach, 11 typically developing sisters actively collaborated in the study to collect and analyse data as well as disseminate their experiences, needs and perspectives in their local communities. This is the first study to use a modified Photovoice methodology which provided typically developing sisters an active participatory role. The results highlighted the feelings, needs and thoughts the sisters expressed in their role as siblings, friends, but also as students and citizens with a passion for advocacy, and limited support in the community due to unhelpful attitudes of members of their community towards autism. The findings indicated that the current method used can successfully co-generate research findings with family members by ensuring pathways for engaging local community. This is crucial in shifting the balance between vulnerability and resilience in families raising an autistic child. Furthermore, when knowledge about the lived experience is drawn directly from the perspective of the actual people (siblings) involved in the phenomenon (siblinghood and autism), a more appropriate, responsive and need-fulfilling strategy of supportive and proactive support systems can be initiated

Cytosine Methyltransferases as Tumor Markers

Changes in DNA methylation patterns is a prominent characteristic of human tumors. Tumor cells display reduced levels of genomic DNA methylation and site-specific CpG island hypermethylation. Methylation of CpG dinucleotides is catalyzed by the enzyme family of DNA methyltransferases (DNMTs). In this review, the role of DNA methylation and DNMTs as key determinants of carcinogenesis is further elucidated. The chromatin modifying proteins that are known to interact with DNMTs are also described. Finally, the role of DNMTs as potential therapeutic targets is addressed

FlowUnlocked in East London

Who we are: We are a collaborative group of three; Georgia Pavlopoulou, Doctor in Psychology and Mental health, UCL autism researcher & neurodiversity advocate; Jon Adams, neurodivergent polymath, Synaesthete, MHChampion & artist, Briony Campbell, east London photographer, filmmaker & creative facilitator. We are funded by UCL Culture. About our funder We are being funded by UCL Culture (University College London), within the Trellis project. The intentions of Trellis are to connect UCL researchers with local artists and engage the east London communities that surround the new UCL East campus, currently under construction on the Queen Elizabeth Olympic Park. At this stage we have been funded a small amount in order to refine our methodologies and ideas and develop our proposal for a larger project. Your participation in our consultancy group would be helping us to do this. What we’re doing We aim to codesign and codeliver a creative participatory research project, which will seek to illuminate the relationships that matter to autistic people during and after lockdown in east London. We are interested in environmental and sensory relationships as well as interpersonal and human/object/animal relationships. The project will focus on east Londoners. Our intention is to create a space for autistic east Londoners to share their perspectives and ideas on relationships, as part of a knowledge exchange with artists and researchers. This project aims to engage autistic people in collaborative and creative practice. We want to enhance awareness and acceptance of autistic people, by creating honest and compelling public art inspired by how Autisic people relate to the communities and environments around them

'I can actually do it without any help or someone watching over me all the time and giving me constant instruction': Autistic adolescent boys' perspectives on engagement in online video gaming

Research into autistic adolescents' engagement in online gaming has so far focused on time spent gaming, or characterizing problematic gaming behaviour and has relied mostly on caregiver report. In the current study, we interviewed 12 autistic adolescent boys, asking about their perspectives on their engagement in online gaming, and their motivations. We analysed the interview data using thematic analysis and identified three key themes in the data, which focused on agency and a sense of belonging, emotion regulation, and acknowledgement of the differing perceptions that the young people and their caregivers had of gaming. Our findings show the need to include the viewpoints of autistic young people in research about their interests and well-being, and provide insights that can help caregivers and professionals to support autistic young people in flourishing

The experiences of autistic young people and their parents of lockdown and the reopening of schools: Key messages for policy makers, schools and families

This briefing reports on the findings of qualitative research, funded by the British Educational Research Association (BERA) conducted in late 2020 with 17 parents of autistic children and young people (CYP) attending mainstream schools in England, as well as six autistic CYP themselves. The aim of the research was to generate insight into these parents and children’s lived experiences of the 2020 lockdown, home-schooling, virtual learning and return to school. While much of the broader focus on impacts of lockdown on education has shown the effects on CYP experiencing socio-economic deprivation, this research demonstrates its significant impacts on autistic CYP, who were already at risk of educational exclusion pre-pandemic. The briefing provides evidence to contribute to current debates about how schools move forward in the wake of the pandemic

Lessons from lockdown: Autistic students, parents and mainstream schools

This paper reports on the findings of a BERA-funded small-scale project that explores the impacts of COVID-19 lockdowns on the educational experiences of autistic children and young people who attend mainstream schools and their parents/carers in England. We observe that, unsurprisingly, lockdown resulted in associated stresses for families. However, our main argument is that for the participants, the pandemic has not been experienced to the same extent as is popularly understood; that is, causing major disruption to children's schooling experiences and/or unusual levels of social isolation. Using the concept of stigma as a theoretical resource, we argue that this is because the families with whom we spoke were already experiencing, pre-COVID-19, disrupted schooling and degrees of social isolation. Indeed, for many of the young people, the break from school occasioned by lockdown allowed them a release from the more negative and stigmatising aspects of their routine experiences within school. We therefore argue that the disruption of the pandemic sheds light on how stigma shapes students' daily school experiences. autism, mainstream schools, pandemic, stigma, familie