'Building bridges': reflections and recommendations for co-producing health research.

BACKGROUND: Co-produced research is when all stakeholders, including experts by experience and researchers, work together to conceptualise, design, deliver and disseminate research to enhance understanding and knowledge. This type of participatory inquiry is being increasingly used across health research; however, it continues to be a complex area to navigate given existing institutional structures. MAIN BODY: We collaborated across three independent co-produced research studies to share insights, reflections, and knowledge of our work in the fields of HIV, mental health, and disability research. We co-designed and delivered a three-hour online workshop at a conference to share these reflections using the metaphor of 'building bridges' to describe our co-production journey. We generated key principles of co-production from our different experiences working in each individual research project as well as together across the three projects. Our principles are to: (1) be kind, have fun and learn from each other; (2) share power (as much as you can with people); (3) connect with people you know and don't know; (4) remain connected; and (5) use clear and simple language. CONCLUSION: We recommend that co-produced research needs additional funding, resource, and flexibility to remain impactful and ethical. Co-produced research teams need to be mindful of traditional power structures and ensure that the process is transparent, fair, and ethical. Addressing equality, diversity, and inclusion of traditionally underrepresented groups in research is essential as are the skills, expertise, and experiences of all members of the co-production team.

Co-produced research occurs when a range of people, including researchers and people with lived experience of a topic work together on all stages of a piece of research, from design to publication, to improve understanding of a topic. This methodology has become increasingly popular in the field of health research, however ­ it can be difficult to undertake because of how health institutions are structured. As a team, we examined three co-produced studies (focusing on HIV, mental health, and disability research) to share our insights and reflections. We then shared these reflections through a co-designed online workshop at a conference. We used the metaphor of 'building bridges' to describe our teamwork. From our experiences on these studies, we came up with five key suggestions for co-production in research: (1) be kind, have fun and learn from each other; (2) share power as much as possible with everyone; (3) connect with people you know and those you don't; (4) stay connected; (5) use clear and simple language. To achieve ethical and impactful co-produced research, we suggest that it needs more funding, resources, and flexibility. Teams who are conducting co-produced research must be fair and clear about how they do so, and ensure that everyone, especially groups who are often unheard, get a chance to be part of research so that everyone's skills and experiences are equally considered.

"I'm the Family Ringmaster and Juggler": Autistic Parents' Experiences of Parenting During the COVID-19 Pandemic.

Background: Little is known about autistic parenthood. The literature that exists suggests that autistic parents can find it difficult to manage the everyday demands of parenting and domestic life. While emerging research has also highlighted more positive parenting experiences, greater understanding of autistic parenthood is needed. Objective: This study sought to understand autistic parents' parenting experiences during the initial phase of the COVID-19 pandemic. Methods: Thirty-five Australian autistic parents (95% women) of autistic children (aged 4-25 years) took part in semi-structured interviews designed to elicit their experiences of life during lockdown. We used reflexive thematic analysis using an inductive (bottom-up) approach to identify patterned meanings within the data set. Results: Autistic parents repeatedly spoke of how the lockdown brought some initial relief from the intensity of their usual lives caring for their children. Nevertheless, most autistic parents felt that the "cumulative stress" of trying to juggle everything during lockdown proved very challenging, which eventually took its toll on parents' mental health. Parents were aware that they needed support but found it difficult to reach out to their usual social supports (including autistic friends) for help, and formal supports were virtually nonexistent. Consequently, they felt "very much forgotten." Nevertheless, they described how their connections with their children grew stronger over lockdown as they focused on nurturing their children's "mental health ahead of everything else." Conclusions: Our analysis shows how challenging conventional life can be for autistic parents. Parenting requires grappling with a distinctive set of demands, which are usually partially manageable through the informal supports many autistic parents draw upon. The relative absence of informal supports during the pandemic, however, left them reliant on more formal supports, which were not forthcoming. Research is urgently needed to identify the most effective formal supports for autistic parents, ideally in partnership with autistic parents themselves.

Why is this an important issue?: There is very little research about what autistic parents think about being a parent and how they manage in their everyday lives. What was the purpose of this study?: We, a group of autistic and non-autistic researchers, worked together to look at autistic people's experiences of life during the COVID-19 pandemic. In this study, led by an autistic parent, we focused on understanding what parenting was like for autistic parents during this time. What did we do?: We spoke to 35 autistic parents, mostly from Australia, about their experiences of life during the first COVID-19 lockdown. Almost all parents were women. They each spoke to us for about 1 hour. We discussed questions like, "What has been difficult for your child about being required to stay at home? And what has been positive about it? What about you? How have you found having to stay at home?". What were the results of the study?: Autistic parents told us that life before COVID-19 could "be really hard." Their days were spent focusing on their children and supporting them, but they felt life became a bit simpler during lockdown. They also did not have "to go out in the non-autistic world," which they found exhausting. But lockdown made things difficult, too. Autistic parents told us that they were stressed about trying to juggle everything at home, such as home learning, working from home, and cleaning the house. They also felt that they were the ones supporting everyone else. This meant they did not get the rest they needed. They were also worried about COVID-19. These worries and pressure often had a terrible effect on autistic parents' mental health. They wanted to reach out to their friends­especially autistic friends­for help but often could not. There were few other supports available to help them. Even when things were difficult, they told us that they nonetheless felt connected with their children during lockdown and that they were putting their children's mental health first, above everything else. What do these findings add to what was already known?: This study shows how hard everyday life can be for autistic parents. These parents usually rely on their friends for support. But they could not do that during lockdown. This meant they had to get help from more official supports and services. But these often just were not available. As a result, autistic parents felt "very much forgotten" as a group. What are potential weaknesses in the study?: Most of our participants were women, well educated, and White. We do not know if our autistic parents' experiences would be the same for other autistic parents, such as autistic fathers or those from other racial/ethnic backgrounds. How will these findings help autistic adults now or in the future?: These findings show how important it is to understand how we can support autistic parents and make their lives better during times of crisis and in more normal times. This needs to be done in partnership with autistic parents.

COVID-19, social isolation and the mental health of autistic people and their families: A qualitative study.

LAY ABSTRACT: In this study, we show that autistic people and their families have found it very difficult to deal with the lockdowns during the COVID-19 pandemic. Autistic and non-autistic researchers spoke to 144 people, including 44 autistic adults, 84 parents of autistic children and 16 autistic young people (12-18 years old). We asked them about their everyday lives and mental health during lockdown. People told us that they enjoyed having fewer obligations and demands compared to pre-COVID-19 life. They felt that life was quieter and calmer. But people also told us again and again how much they missed meeting people in real life, especially their friends, and their therapists and support workers. People told us that their mental health suffered because they did not have contact with their friends and services. Importantly, many people (including researchers) think that autistic people do not want friends or to be around people. But our results show that is not true. Many autistic people do want friends and to be around other people. Some people's mental health has been damaged by not being able to see people during COVID-19. Autistic people need support in many areas of life so they can keep socialising and seeing their friends even through difficult times, like pandemics.

In the physical to digital transition with friends - a story of performing inclusive research together no matter what life throws at you.

BACKGROUND: As part of 'The Hub' project at Wellcome Collection, a team of eight co-researchers with learning disabilities alongside academics created an online survey to challenge public understanding of learning disabilities. Using creative and arts-based methods, co-researchers remotely co-analysed the survey results amid Covid-19 lockdown challenges. Here, we explore our unexpected 'transition' journey from the physical 'Hub' to the digital space. METHODS: We organised 20 sessions at 'The Hub' and used audio/video/photo recordings to 'capture' key moments. With the lockdown, we ensured that every co-researcher had access to and support for digital technologies. Throughout 2020, we organized 28 Zoom meetings involving all co-researchers. In June, Lilly and Sue conducted Zoom interviews with the co-research team to reflect on our 'transition' journey. In this creative video-form submission accompanied by an accessible report, Lilly puts together a story of how we transitioned and felt throughout this process. FINDINGS: We identify that trust and the social bonds established at 'The Hub' are the key components of our transition to the digital environment. There is the tension between longing for in-person contact and trying to make the most out of the situation to maintain these relationships. At the heart of this is the motivation to 'change the world' and the strive for social justice. Having time and opportunity to improve, and co-researchers' steady growth in confidence, are equally important. CONCLUSIONS: The determination for maintaining friendships among co-researchers and the motivation to 'change the world' overcome Covid-19 related challenges in continuing co-research. SUMMARY: [Table: see text].

Supporting Remote Survey Data Analysis by Co-researchers with Learning Disabilities through Inclusive and Creative Practices and Data Science Approaches.

Through a process of robust co-design, we created a bespoke accessible survey platform to explore the role of co-researchers with learning disabilities (LDs) in research design and analysis. A team of co-researchers used this system to create an online survey to challenge public understanding of LDs [3]. Here, we describe and evaluate the process of remotely co-analyzing the survey data across 30 meetings in a research team consisting of academics and non-academics with diverse abilities amid new COVID-19 lockdown challenges. Based on survey data with >1,500 responses, we first co-analyzed demographics using graphs and art & design approaches. Next, co-researchers co-analyzed the output of machine learning-based structural topic modelling (STM) applied to open-ended text responses. We derived an efficient five-steps STM co-analysis process for creative, inclusive, and critical engagement of data by co-researchers. Co-researchers observed that by trying to understand and impact public opinion, their own perspectives also changed.

"It just fits my needs better": Autistic students and parents' experiences of learning from home during the early phase of the COVID-19 pandemic.

Background and aims: The COVID-19 pandemic has caused unprecedented disruption to people's lives, especially for families, whose children have been taken out of schools during lockdown restrictions and required to learn from home. Little is known, however, about the perceived impact of the lockdown restrictions on the educational experiences of autistic children and young people - a group whose conventional schooling experiences are already often challenging. In this study, we sought to (1) understand these experiences from the perspectives of autistic young people and their parents, and (2) identify the underlying sources of positive experiences at this challenging time, in order to inform the ways in which autistic children might flourish at school in more normal times. Methods: Ninety-one Australian participants, including 16 autistic young people aged 12-18 years, 32 autistic parents and 43 non-autistic parents of autistic young people aged 3-18 years, took part in semi-structured interviews about their experiences of life during the initial phase of the COVID-19 pandemic. The interviews were subjected to reflexive, thematic analysis to identify themes and subthemes for each research question. Results: Overall, our participants initially found the transition to learning from home extremely challenging, with parents reporting that the support received from schools was far from adequate. After that initial period of transition, however, many autistic children reported flourishing at home both educationally and personally. For these children and families, we identified three key ingredients essential to this flourishing, including: (i) the importance of connected, trusting relationships ('people'); (ii) the sensory and social safety of home ('place'); and (iii) the flexibility to pace and structure learning to suit the individual child ('time'). Conclusions: While the initial COVID-19 lockdown presented many challenges to children learning at home, there were aspects of this otherwise-unsettling situation that enabled children to thrive and from which we can learn for the future. Implications: These findings have important implications for understanding how and when autistic children might thrive in institutional educational settings once the pandemic subsides, focusing on the relationships between teachers and students, the nature of the physical learning environment and the need for greater flexibility in planning the school day.

Toward Empathetic Autism Research: Developing an Autism-Specific Research Passport.

Autistic adults sometimes report negative experiences of research participation. People have developed passports or toolkits in other areas where community members report dissatisfaction (e.g., health care, criminal justice). We created a Research Passport that autism researchers and autistic adults could use to support the inclusion of autistic adults as research participants. We designed and developed the Research Passport via an iterative design process. First, we gathered ideas for a Research Passport via focus groups with autistic adults without an intellectual disability (ID) (n = 9) and autism researchers (n = 6; one of whom was autistic). We found that the Research Passport (1) was a useful idea, but not a panacea for all issues in autism research, (2) needed to be universal and flexible, and (3) could have a broad remit (e.g., to record scores on commonly used standardized tasks that could, with permission, be shared with different researchers). Next, we conducted a preliminary evaluation of a prototype Research Passport via usability testing in three ongoing research projects. Nine autistic participants without an ID provided feedback on the Research Passport (via a survey), as did three nonautistic researchers (via interviews). We found that the Research Passport (1) promoted positive participant-researcher relationships, (2) provided a structure and framework to support existing practices, and (3) needed to be adapted slightly to facilitate usability and manage expectations. Overall, the Research Passport was useful in promoting empathetic autism research. Further design and development of the Research Passport are warranted. Lay summary: Why was this research developed?: Autistic adults taking part in research do not always have good experiences. An autistic member on our team thought that a Research Passport could help improve people's experiences. This idea was inspired by "passports" or "toolkits" that autistic people can use when visiting professionals such as doctors (so the doctor knows about the person and how to support them).What does the Research Passport do?: The Research Passport lets autistic people tell researchers about themselves before taking part in a research study. Autistic people can decide how much, or how little, they tell the researcher. Autistic and/or nonautistic researchers can use the Research Passport to try and make sure that their autistic participants have good experiences when taking part in research.How did the researchers evaluate the Research Passport?: First, nine autistic adults (who did not have an intellectual disability) and six autism researchers took part in group discussions. We asked what they thought about our Research Passport idea and what it should include. We made a Research Passport mock-up based on these discussions. Nine autistic participants who did not have an intellectual disability used the mock-up in one of three university research projects. Autistic participants completed a survey to tell us good and not-so-good things about the Research Passport. Also, we interviewed three researchers about using the Research Passport (asking what they liked and what could have been better).What were the findings?: Autistic adults and researchers involved in designing the Research Passport thought the Research Passport (1) could be useful but could not solve all problems in autism research, (2) needed to be suitable for many different people, and (3) could have many different benefits (e.g., collecting participants' scores on tests that researchers use a lot, so participants do not have to keep doing the same tests each time they take part in a new research study).Autistic adults and researchers used the Research Passport in ongoing studies and told us that it (1) led to good relationships between participants and researchers, (2) helped researchers make sure that the way they did their research was acceptable, and (3) was useful. However, participants need to be told what the Research Passport can/cannot help them with.What were the weaknesses of this project?: This study involved a small group of autistic adults and researchers, and the results may not be the same with autistic adults and researchers who have different needs. Also, participants said the Research Passport was not very easy to complete, and a bit long. We need to change the Research Passport so that a wider range of autistic people (like those with intellectual disability) can use it.What are the next steps?: The Research Passport needs to be professionally designed so it is easier to be used by a wider range of autistic people. A bigger evaluation of the Research Passport could allow us to test it with more participants and in more research studies.How will this work help autistic adults now or in the future?: Using the Research Passport could, with some changes and alongside other supports, improve the experience of autistic adults taking part in research.

"We have been magnified for years - Now you are under the microscope!": Co-researchers with Learning Disabilities Created an Online Survey to Challenge Public Understanding of Learning Disabilities.

Public attitudes towards learning disabilities (LDs) are generally reported as positive, inclusive and empathetic. However, these findings do not reflect the lived experiences of people with LDs. To shed light on this disparity, a team of co-researchers with LDs created the first online survey to challenge public understanding of LDs, asking questions in ways that are important to them and represent how they see themselves. Here, we describe and evaluate the process of creating an accessible survey platform and an online survey in a research team consisting of academic and non-academic professionals with and without LDs or autism. Through this inclusive research process, the co-designed survey met the expectations of the co-researchers and was well-received by the initial survey respondents. We reflect on the co-researchers' perspectives following the study completion, and consider the difficulties and advantages we encountered deploying such approaches and their potential implications on future survey data analysis.

'People should be allowed to do what they like': Autistic adults' views and experiences of stimming.

'Stereotyped or repetitive motor movements' are characterised as core features in the diagnosis of autism, yet many autistic adults (and the neurodiversity movement) have reclaimed them as 'stimming'. Supported by a growing body of scientific research, autistic adults argue that these behaviours may serve as useful coping mechanisms, yet little research has examined stimming from the perspective of autistic adults. Through interviews and focus groups, we asked 32 autistic adults to share their perceptions and experiences of stimming, including the reasons they stim, any value doing so may hold for them and their perceptions of others' reactions to stimming. Using thematic analysis, we identified two themes: stimming as (1) a self-regulatory mechanism and (2) lacking in social acceptance, but can become accepted through understanding. Autistic adults highlighted the importance of stimming as an adaptive mechanism that helps them to soothe or communicate intense emotions or thoughts and thus objected to treatment that aims to eliminate the behaviour.

"Life is Much More Difficult to Manage During Periods": Autistic Experiences of Menstruation.

Although menarche and menstruation are perceived to be overwhelmingly negative events for developmentally-disabled women, women's health issues remain under-researched in autism. Here, we conducted a preliminary investigation of the experiences of post-menarcheal autistic (n = 123) and non-autistic (n = 114) respondents to a brief online survey. Although autistic respondents reported many overlapping issues and experiences with non-autistic respondents, they also highlighted distinct-and sometimes-distressing-issues relating to menstruation, especially a cyclical amplification of autistic-related challenges, including sensory differences and difficulties with regulating emotion and behavior, which had a significant, negative impact on their lives. These initial findings call for systematic research on the potential causes, correlates and consequences of menstrual-related problems in autistic individuals-across the spectrum and the lifespan.

The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype.

We used Framework Analysis to investigate the female autism phenotype and its impact upon the under-recognition of autism spectrum conditions (ASC) in girls and women. Fourteen women with ASC (aged 22-30 years) diagnosed in late adolescence or adulthood gave in-depth accounts of: 'pretending to be normal'; of how their gender led various professionals to miss their ASC; and of conflicts between ASC and a traditional feminine identity. Experiences of sexual abuse were widespread in this sample, partially reflecting specific vulnerabilities from being a female with undiagnosed ASC. Training would improve teachers' and clinicians' recognition of ASC in females, so that timely identification can mitigate risks and promote wellbeing of girls and women on the autism spectrum.