In this perspective, we argue that the regular use of diversity advisory boards in autism research will improve the inclusivity and participation of marginalized groups in autism research and intervention development. We define a diversity advisory board as a representative group of community members, scholars, policymakers, and area experts that specifically discuss and examine research and interventions for accurate representation and consideration of underrepresented and marginalized identities such as racial, gender, sexual minorities, and dis/abilities who are often excluded from the research process. We present three arguments for forming and integrating diversity advisory boards in autism research and intervention development. First, diversity advisory boards would encourage scholars and interventionists to be intentional in considering how their intervention will work for culturally, racially, gendered, and dis/ability diverse groups. Second, diversity advisory boards will lead to increased diverse samples of autistic participants if members of the board are incentivized to support recruitment efforts from their local communities and networks. Finally, the regular use of diversity advisory boards will improve the research-to-practice gap by including a wider range of community members in the early development and implementation of autism interventions. Recommended actions researchers could take to select, maintain, and meaningfully engage a diversity advisory board are included in this perspective. Lay abstract This article argues that using groups of individuals that specifically focus on addressing issues with diversity in autism research and autism intervention development are key in ensuring that a greater amount of racial, ethnic, and gender diverse autistic individuals are included in the research and that the research is addressing the needs of these individuals and groups. We call these groups a diversity advisory board. A diversity advisory board will help improve diversity in autism research and intervention development by making sure that autism researchers (1) are intentional about addressing issues of diversity in their research and (2) are able to recruit a greater number of autistic individuals with diverse identities, and (3) by giving greater consideration to the context of diverse autistic individuals which will help autism-focused interventions work better in community settings. We give a short description of these arguments and ideas for how to form and use a diversity advisory board.

Perspective: The role of diversity advisory boards in autism research

Participatory approaches, in which researchers work together with members of the autism community (e.g., autistic people, family members, caregivers, or other stakeholders) to design, conduct, and disseminate research, have become increasingly prominent within the field of autism research over the past decade. Despite growing academic and community interest in conducting participatory studies, stakeholder collaboration remains infrequent in autism research, at least partially due to systemic barriers. To help reduce barriers to engaging in participatory autism research, the International Society for Autism Research (INSAR) Autistic Researchers Committee has launched the INSAR Community Collaborator Request (ICCR; https://www.autism-insar.org/page/iccr), a platform on the INSAR website that allows autism researchers conducting participatory research to seek out stakeholder collaborators from the autism community (including both autistic people and their family members/caregivers, as relevant to a given research project). Interested stakeholders also have the opportunity to subscribe to ICCR posts, allowing them to be alerted of new opportunities for collaboration and potentially increasing their involvement in autism research. Overall, the ICCR provides a venue to connect autism researchers with potential community collaborators, reducing barriers to participatory autism research and increasing the frequency of successful community-academic partnerships within the field. We are hopeful that in the long term, such changes will lead to greater alignment between research outputs and the goals of the greater autism community, and consequently an increase in the overall quality and relevance of autism research.

The INSAR Community Collaborator Request: Using community-academic partnerships to enhance outcomes of participatory autism research.

There are prominent sex differences in the prevalence of numerous mental health and neurodiverse conditions. Both sex and gender related factors affect the expression and diagnosis of mental health conditions. Even though, sex and gender research has been integrated in research policies, the underlying mechanisms and interactions between them are still not fully understood. This lack of knowledge has harmful consequences for diagnosis and treatment of mental health conditions. Hence, we have set up a co-creation session in a one week workshop, including a multidisciplinary team of 25 scientists, clinicians and policy makers, to identify the main barriers in sex and gender research in neuroscience of mental health. We provide recommendations and solutions for three focus areas including neuroscientific methods, bridging the gap between research and the clinic, and stakeholder collaborations. These recommendations include guidelines for documenting sex and gender methods and results, analysis beyond the binary and open science, which will drive our understanding of sex and gender related mechanisms in neuroscience. This will ultimately benefit public health as this is an important step towards precision medicine and may function as an archetype for studying diversity. 

Roadmap towards understanding sex and gender in neuroscience of mental health

There is increased recognition that people with lived-experience of mental ill-health ought to be centred in research design, implementation and translation, and quality improvement and program evaluation of services. There is also an increased focus on ways to ensure that co-design processes can be led by people with lived-experience of mental ill-health. Despite this, there remains limited explanation of the physical, social, human, and economic infrastructure needed to create and sustain such models in research and service settings. This is particularly pertinent for all health service sectors (across mental and physical health and social services) but more so across tertiary education settings where research generation occurs for implementation and translation activities with policy and services. The Co-Design Living Labs program was established in 2017 as an example of a community-based embedded approach to bring people living with trauma and mental ill-health and carers/family and kinship group members together with university-based researchers to drive end-to-end research design to translation in mental healthcare and research sectors. The program’s current membership is near to 2000 people. This study traces the evolution of the program in the context of the living labs tradition of open innovation. It overviews the philosophy of practice for working with people with lived-experience and carer/family and kinship group members—togetherness by design. Togetherness by design centres on an ethical relation of being-for that moves beyond unethical and transactional approaches of being-aside and being-with, as articulated by sociologist Zygmunt Bauman. The retrospective outlines how an initial researcher-driven model can evolve and transform to become one where people with lived-experience of mental ill-health and carer/family kinship group members hold clear decision-making roles, share in power to enact change, and move into co-researcher roles within research teams. Eight mechanisms are presented in the context of an explanatory theoretical model of change for co-design and coproduction, which are used to frame research co-design activities and provide space for continuous learning and evolution of the Co-Design Living Labs program.

A co-design living labs philosophy of practice for end-to-end research design to translation with people with lived-experience of mental ill-health and carer/family and kinship groups

The Lived Experience Researchers (LERs) of the Mental Health Policy Research Unit (MHPRU) reflect on the experience of conducting rapid co-produced research, particularly during the first year of the COVID-19 pandemic. Throughout this perspective article, we introduce requirements for co-production applying the 4Pi Framework, reflect on specific characteristics of co-production in rapid research, discuss strengths and challenges for involvement of LERs in rapid research, and lastly provide recommendations to achieve meaningful involvement. Incorporating meaningful co-production is an augmentation to any research project, with several benefits to the research, to the team, and to individual researchers. Particularly in the case of rapid research, that aims for efficient translation of knowledge into practice, involvement of experts by experience will be key. The work conducted by the MHPRU LERs presented in this paper demonstrates the viability, value, and potential of this way of working.

Co-producing rapid research: Strengths and challenges from a lived experience perspective

As reviewers, editors, and researchers with lived experience of mental health challenges, addiction, and/or psychosocial distress/disability, the authors have struggled to find an adequate way to address inappropriate or misleading use of the term "participatory methods" to describe research that involves people with lived experience in only a superficial or tokenistic manner. The authors of this article have found that, in their experience, editors or other reviewers often appear to give authors extensive leeway on claims of participatory methods that more accurately reflect tokenism or superficial involvement. The problem of co-optation is described, examples from the authors' experiences are given, the potential harms arising from co-optation are articulated, and a series of concrete actions that journal editors, reviewers, and authors can take to preserve the core intent of participatory approaches are offered. The authors conclude with a call to action: the mental health field must ensure that power imbalances that sustain epistemic injustice against people with lived experience are not worsened by poorly conducted or reported studies or by tokenistic participatory methods.

Strengthening Review and Publication of Participatory Mental Health Research to Promote Empowerment and Prevent Co-optation.

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Strengthening Review and Publication of Participatory Mental Health Research to Promote Empowerment and Prevent Co-optation.