Participatory translational science of neurodivergence: model for attention-deficit/hyperactivity disorder and autism research.

BACKGROUND: There are increasing calls for neurodivergent peoples' involvement in research into neurodevelopmental conditions. So far, however, this has tended to be achieved only through membership of external patient and public involvement (PPI) panels. The Regulating Emotions - Strengthening Adolescent Resilience (RE-STAR) programme is building a new participatory model of translational research that places young people with diagnoses of attention-deficit hyperactivity disorder (ADHD) and autism at the heart of the research team so that they can contribute to shaping and delivering its research plan. AIMS: To outline the principles on which the RE-STAR participatory model is based and describe its practical implementation and benefits, especially concerning the central role of members of the Youth Researcher Panel (Y-RPers). METHOD: The model presented is a culmination of a 24-month process during which Y-RPers moved from advisors to co-researchers integrated within RE-STAR. It is shaped by the principles of co-intentionality. The account here was agreed following multiple iterative cycles of collaborative discussion between academic researchers, Y-RPers and other stakeholders. RESULTS: Based on our collective reflections we offer general guidance on how to effectively integrate young people with diagnoses of ADHD and/or autism into the core of the translational research process. We also describe the specific theoretical, methodological and analytical benefits of Y-RPer involvement in RE-STAR. CONCLUSIONS: Although in its infancy, RE-STAR has demonstrated the model's potential to enrich translational science in a way that can change our understanding of the relationship between autism, ADHD and mental health. When appropriately adapted we believe the model can be applied to other types of neurodivergence and/or mental health conditions.

Strategies to improve the magnetic resonance imaging experience for autistic individuals: a cross-sectional study exploring parents and carers' experiences.

BACKGROUND: Autistic individuals encounter numerous barriers in accessing healthcare, including communication difficulties, sensory sensitivities, and a lack of appropriate adjustments. These issues are particularly acute during MRI scans, which involve confined spaces, loud noises, and the necessity to remain still. There remains no unified approach to preparing autistic individuals for MRI procedures. METHODS: A cross-sectional online survey was conducted with parents and carers of autistic individuals in the UK to explore their experiences, barriers, and recommendations concerning MRI scans. The survey collected demographic information and experiential accounts of previous MRI procedures. Quantitative data were analysed descriptively, while key themes were identified within the qualitative data through inductive thematic analysis. RESULTS: Sixteen parents/carers participated. The majority reported difficulties with communication, inadequate pre-scan preparation, and insufficient adjustments during MRI scans for their autistic children. Key barriers included an overwhelming sensory environment, radiographers' limited understanding of autism, and anxiety stemming from uncertainties about the procedure. Recommended improvements encompassed accessible communication, pre-visit familiarisation, noise-reduction and sensory adaptations, staff training on autism, and greater flexibility to meet individual needs. CONCLUSIONS: There is an urgent need to enhance MRI experiences for autistic individuals. This can be achieved through improved staff knowledge, effective communication strategies, thorough pre-scan preparation, and tailored reasonable adjustments. Co-producing clear MRI guidelines with the autism community could standardise sensitive practices. An individualised approach is crucial for reducing anxiety and facilitating participation. Empowering radiographers through autism-specific education and incorporating insights from autistic individuals and their families could transform MRI experiences and outcomes.

Links between mental health problems and future thinking from the perspective of adolescents with experience of depression and anxiety: a qualitative study.

BACKGROUND: Depression and anxiety are common during adolescence and could have detrimental impacts on young people's ability to make and implement plans for their future. However, to the best of our knowledge, no other study has adopted a qualitative approach in investigating these effects from the perspective of adolescents with lived experiences of depression and anxiety. We sought to understand how young people perceive and interpret the impact of mental health conditions on their thinking about the future. METHODS: We conducted semi-structured interviews with 19 adolescents aged 16-19 years in the UK (median age = 19, IQR = 1.5), who had a history of protracted periods of clinical or subclinical depression and/or anxiety. They were asked to reflect on how their ability to think about the future and the content of the future-related thinking was impacted during periods of poor mental health, compared with periods of feeling well. Interviews were transcribed verbatim and subjected to thematic content analysis. RESULTS: Five domains were identified. First, the impact of mood on future thinking capability focuses on reduced ability and motivation to engage in future thinking. Second, the impact of mood on images, thoughts, and feelings about the future includes the emotional valence of future-related thoughts, their vividness, structure, and the extent to which they intimated subjective feelings of control (i.e., agency). Third, social influences focuses on social factors that might ameliorate or exacerbate future thinking. Fourth, reflections on personal worries and expectations about the future captures personal interpretations of past worries and hopes and how future thinking affected mood. Finally, personal coping refers to how young people cope with the negative emotions that come with future thinking. CONCLUSIONS: This study provided a nuanced and granular account of how depression and anxiety impacted young people's future thinking based on their lived experiences. By highlighting the different ways that variations in future thinking were experienced as a function of depression and anxiety, our analysis highlighted new factors that should be considered in studies of adolescent mental health risk, which could inform the development of new therapeutic approaches.

Toward Autism-Friendly Magnetic Resonance Imaging: Exploring Autistic Individuals' Experiences of Magnetic Resonance Imaging Scans in the United Kingdom, a Cross-Sectional Survey.

Background: Autistic individuals might undergo a magnetic resonance imaging (MRI) examination for clinical concerns or research. Increased sensory stimulation, lack of appropriate environmental adjustments, or lack of streamlined communication in the MRI suite may pose challenges to autistic patients and render MRI scans inaccessible. This study aimed at (i) exploring the MRI scan experiences of autistic adults in the United Kingdom; (ii) identifying barriers and enablers toward successful and safe MRI examinations; (iii) assessing autistic individuals' satisfaction with MRI service; and (iv) informing future recommendations for practice improvement. Methods: We distributed an online survey to the autistic community on social media, using snowball sampling. Inclusion criteria were: being older than 16, have an autism diagnosis or self-diagnosis, self-reported capacity to consent, and having had an MRI scan in the United Kingdom. We used descriptive statistics for demographics, inferential statistics for group comparisons/correlations, and content analysis for qualitative data. Results: We received 112 responses. A total of 29.6% of the respondents reported not being sent any information before the scan. Most participants (68%) confirmed that radiographers provided detailed information on the day of the examination, but only 17.1% reported that radiographers offered some reasonable environmental adjustments. Only 23.2% of them confirmed they disclosed their autistic identity when booking MRI scanning. We found that quality of communication, physical environment, patient emotions, staff training, and confounding societal factors impacted their MRI experiences. Autistic individuals rated their overall MRI experience as neutral and reported high levels of claustrophobia (44.8%). Conclusion: This study highlighted a lack of effective communication and coordination of care, either between health care services or between patients and radiographers, and lack of reasonable adjustments as vital for more accessible and person-centered MRI scanning for autistic individuals. Enablers of successful scans included effective communication, adjusted MRI environment, scans tailored to individuals' needs/preferences, and well-trained staff.

Why is this an important issue?: Magnetic resonance imaging (MRI) is an examination that shows human anatomy and may explain the causes of symptoms. Autistic people may need MRI scans for various reasons, such as low back pain, headaches, accidents, or epilepsy. They have known sensitivities to sound, light, smell, or touch and increased anxiety, so the narrow, loud, isolating, unfamiliar MRI environment may be overwhelming to them. If MRI scans are, for these reasons, inaccessible, many autistic people will have to live with long-standing conditions, pain, or other symptoms, or have delayed treatment, with impact on their quality of life, and life expectancy. What was the purpose of this study?: We tried to understand how autistic people perceive MRI examinations, things that work, and the challenges they face. We also asked for their suggestions to improve practice and accessibility. What did we do?: We distributed an online questionnaire to autistic adults through social media. We analyzed the data using appropriate statistical and text analysis methods. What were the results of the study?: We received 112 responses. Autistic people rated their overall MRI experience as average. Nearly a third (29.6%) reported they were not sent any information before MRI, and only 17.1% reported that radiographers offered some reasonable environmental adjustments. Most participants (68%) reported that radiographers provided detailed information on the day of the scan. Only 23.2% of them disclosed their autistic identity when booking MRIs. We found that quality of communication, physical environment, patient emotions, staff training, stigma, and timely autism diagnosis impacted their MRI experiences. What do these findings add to what was already known?: Autistic people MRI scan experiences are at the heart of this project. Our project shows that MRI for common symptoms is often inaccessible by autistic people. We should improve the MRI environment, adjust communication format/content for them, and deliver person-centered care in MRI. Health care professionals should receive relevant training, to understand the challenges autistic people might face and better support them in MRI scanning. What are potential weaknesses in the study?: The pandemic has impacted participant recruitment; therefore, the results of this sample may not reflect the full impact on the wider autistic population or adequately represent the autistic community, due to small size and including only people who could consent.These results come from different centers, so there is a lot of variation in the use of MRI equipment. How will these findings help autistic adults now or in the future?: We outline the main challenges associated with MRI, so autistic adults and their families/carers understand more of what they could expect in future examinations; hopefully, researchers and scanner manufacturers will try to tackle these challenges to make MRI scans truly accessible for autistic people.We shared this knowledge with stakeholders to develop guidelines and started using it in training. We want to ensure that MRI is person-centered and more accessible for autistic patients.

'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.

Social media use in female adolescents: Associations with anxiety, loneliness, and sleep disturbances.

Social Media Disorder (SMD) is characterised by the intense and excessive use of social media. Although previous studies have shown that SMD was associated with poor mental health, research across types of usage and platforms remain limited. Here, we conducted an initial investigation of social media usage across platforms and its relation to anxiety, sleep and loneliness in female adolescents. Forty one 16- to 19-year-old British female adolescents were administered online questionnaires. Intensity of social media activity across Facebook, Instagram, Snapchat and Twitter was measured with the Social Media Disorder Scale. Anxiety was indicated by the Beck Anxiety Inventory Trait, loneliness was examined via a short three-point questionnaire and sleep quality was measured via both the Pittsburgh Sleep Quality Index and self-reported seven-day sleep diaries. Results showed that, compared to those without SMD, users with SMD experienced elevated levels of loneliness and had less sleep on average, and during the weekdays in particular. Only frequency of posting on Facebook, but not general usage, was associated with poorer sleep quality. These preliminary findings showed that social media disorder across platforms and usage could potentially have different associations to mental health and sleep.

"I often have to explain to school staff what she needs". School experiences of non-autistic siblings growing up with an autistic brother or sister.

BACKGROUND: Recent autism research has evidenced a shift from psychological outcomes to contextualised approaches to understanding the varying needs of non autistic siblings of autistic children across different systems. Yet, there is limited research exploring the lived experiences of siblings in their school context. METHODS: First, a group of school aged sibling advisors worked with the first author to codesign research aims, methods and dissemination practices around the topic of the school experiences of siblings who grow up with an autistic brother or sister in the UK. Then, 28 school-aged siblings of autistic children completed adapted photo-elicitation interviews, to discuss their school experiences. A background questionnaire was also administered to their parents and carers. RESULTS: Thematic analysis was employed. The master themes included: (i) Impact of home experiences in schoolwork, including limited personal time and sleep disruptions (ii) Siblings' school interactions impact on overall school experience, including a wide range of both typical and difficult experiences such as school day disruptions, (iii) Varied perceived levels of support and understanding, including emotional and/or educational support by family members and a sense of connectedness with peers and teachers who are autistic themselves or connected to someone with a diagnosis of autism. IMPLICATIONS: The results underline the ways home experiences can have an impact on school life of siblings, the positive contribution of the autistic school staff and/or staff who have an autistic family member and the need for an organisational culture of inclusivity and widespread acceptance and awareness around issues of neurodiversity. Our findings suggest several implications for school psychologists in core functions of the educational psychologists' role including training, consultation, assessment, and whole school support. DATA AVAILABILITY STATEMENT: The datasets generated for this study are not readily available because they include sensitive data (photos of siblings' houses, family members, personal objects, and school timetables). Requests to access the datasets should be directed to corresponding author.

Corrigendum: A Good Night's Sleep: Learning About Sleep From Autistic Adolescents' Personal Accounts.

[This corrects the article DOI: 10.3389/fpsyg.2020.583868.].

Autistic adults' personal experiences of navigating a social world prior to and during Covid-19 lockdown in Spain.

BACKGROUND: The SARS-CoV-2 coronavirus pandemic brought significant movement restrictions and national lockdowns. These drastic changes impacted routines, social life and support networks for the autistic community. AIMS: This study investigated the lived experiences of autistic adults with social expectations before and during the first Covid-19 lockdown in Spain. METHODS: A qualitative Reflexive Thematic Analysis was applied to 10 Photo Elicitation Interviews using images provided by five autistic adults. Interviews were conducted at two time points, before the pandemic and during the first lockdown. FINDINGS: Three themes before the pandemic were identified: (1) everyday interactions, (2) finding sense of belonging, and (3) fractured wellbeing, which revealed the participants' eagerness to fit in socially whilst experiencing rejection, weakening their mental health. During the first Covid-19 lockdown, two master themes were identified: (1) daily, positive experiences, and (2) surfacing failures, which emphasised an increased lived stigma as well as an ineffective autism support network, contributing to a heightened anxiety. CONCLUSIONS: The current study provides further support to the recent findings highlighting lack of appropriate mental health support for the autistic communities during the pandemic, across the world. Future research should aim to provide more data on the experiences and needs of autistic communities when sudden societal changes are imposed.

A Good Night's Sleep: Learning About Sleep From Autistic Adolescents' Personal Accounts.

BACKGROUND: Sleep is a strong predictor of quality of life and has been related to cognitive and behavioral functioning. However, research has shown that most autistic people experience sleep problems throughout their life. The most common sleep problems include sleep onset delay, frequent night-time wakings and shorter total sleep time. Despite the importance of sleep on many domains, it is still unclear from first-hand accounts what helps autistic people to sleep. The purpose of this study is to explore together with autistic adolescents their sleep-related practices before bedtime and during the day which contribute to a good night's sleep. METHODS: Fifty-four autistic adolescents collaborated with an academic researcher in a novel adapted photo-elicitation methodology, rooted in a Lifeworld framework. The adolescents were invited to collect and analyze their data. The data were also presented in a community knowledge exchange event. RESULTS: Several self-reported practices that facilitate better nocturnal sleep were identified. Those were organized into two thematics: Evening/bedtime factors and Day time factors. These included practices such as personalized sensory and relaxation tools before bed and during night-time, engaging in a range of physical activities during daytime and accommodating personal time to engage with highly preferred and intense focus activities and hobbies. It also included spending time in predictable and fun ways with family members before bedtime. CONCLUSION: This is the first time that a study uses a novel methodological approach based on personal accounts elicited by photos rooted in a Lifeworld framework to describe personal sleep-related practices before bedtime and during the day to identify a "good night of sleep" in autistic adolescents. The outcomes from the current study showed that sleep facilitating factors are in a direct contrast to the sleep hygiene recommendations. Therefore, it is thus important for the sleep practitioners and healthcare providers to move beyond providing standardized sleep hygiene interventions. A Lifeworld led care model that pays attention to personal experiences, promotes sense of agency, evaluates both autism-specific strengths and struggles could and should complement biomedical approaches. LAY SUMMARY: This is the first study to examine autistic adolescents' self-reported sleep habits and factors which facilitate autistic adolescents' sleep by employing adapted photo-elicitation interviews. This study is innovative in at least three ways. First, it examines the factors that may facilitate a good night's sleep through personal accounts of autistic adolescents. Second, this is the first sleep study to adopt a collaborative, flexible approach to understanding positive sleep factors in the lives of autistic adolescents. This study employed a personalized approach into collecting, categorizing, coding, and analyzing qualitative data allowing autistic adolescents and the researcher to work together across key stages of data collection and data analysis. Third, we adopted a theoretical framework that allows us to consider autistic adolescents in both agency and vulnerability positions when it comes to their sleep difficulties. Our results highlight that sleep should be treated individually and in relation to the environmental and personal factors that affect each autistic person. Hence, researchers and professionals may benefit from working collaboratively with autistic adolescents with the aim to identify individual strengths and adopt a positive narrative around sleep. Furthermore, it is important to further examine both the daytime and evening factors that may affect bedtime and the quality and quantity of sleep as well as the role of intense focused interests and physical activities that cultivate positive feelings and help autistic people to relax before bedtime.

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.

'I don't live with autism; I live with my sister'. Sisters' accounts on growing up with their preverbal autistic siblings.

BACKGROUND: The experiences of siblings in early adolescent years who grow up with an autistic brother or sister have received very little research interest, especially in terms of sisters' experiences. Hence our understanding of wellbeing opportunities and challenges in siblings' everyday life is inadequate and not reflected in the current clinical practices. METHODS: Semi-structured interviews utilising an active, non-judgemental and curious stance to explore how sisters make sense of their everyday experiences (inspired by the notion of mentalizing) were conducted to capture important experiences of nine typically developing female siblings. RESULTS: Interpretative Phenomenological Analysis (IPA) was employed. The master themes included: (i) sisters' interactions with their siblings- 'I don't live with autism, I live with my sister' (ii) sisters' interactions with their parents- 'Always there for us, but often asking too much', (iii) practical struggles of caring- 'Like a lonely fighter, tired but always on duty', (iv) perceived sisters' needs- 'I care about my brother and I want society to care about us'. DISCUSSION: As experts of their own lived experience, sisters shed light on their day-to-day experiences. The themes derived from their experiences may help to draw attention to an appreciation of everyday life including planning for the parts that remain a struggle. This latter point is discussed in terms of implications and adoption of an existential view of wellbeing for future research and practice.