Perspective: The role of diversity advisory boards in autism research

Abstract

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.

Keywords

autism spectrum disorders community engagement diversity diversity boards

There is a dearth of autism research that specifically addresses issues related to marginalized identities such as race, ethnicity, gender, and dis/ability (mental, intellectual, physical, and verbal; see Goodley, 2014). Recent studies and discourse have substantiated that there is limited racial and ethnic representation, among many other marginalized identities, in autism research and intervention development (Jones & Mandell, 2020; Shaia et al., 2020; Steinbrenner et al., 2022). To remedy these disparities, it is critical for researchers to include the perspectives of marginalized autistic communities in the research and development of interventions focused on the needs of autistic individuals. One potential barrier to forming meaningful partnerships when conducting research and developing interventions is the mismatch between researchers and diverse autism communities. This mismatch can raise issues among community members about trust and token representation (Maye et al., 2021). Furthermore, the mismatch of identities can cause members of diverse communities to often feel isolated, misrepresented, or ignored by researchers, as well as create significant gaps in the understanding of these diverse communities’ contexts and cultural norms which is key to improving research and interventions to support these community’s needs. The goal of this perspective piece is to recommend the use of diversity advisory boards in autism research as a first step to addressing such an issue.

Davenport and colleagues (2018) conducted a systematic review of social skill interventions for autistic individuals and found that while a growing amount of autism-related studies are now reporting the racial identity of their participants (62.3% of reviewed studies), only five of the studies reviewed described cultural adaptations of their social skill interventions to support the needs of diverse marginalized identities such as racial/ethnic minorities. Their findings suggested that autism research has not adequately identified the proper means to effectively culturally tailor interventions to the needs of racial and ethnic minorities, among many other marginalized identities. Autism scholars such as Jones and Mandell (2020) have called for increasing the number of Black autism researchers to help address the underrepresentation of Black autistic people in research studies and aid in developing more culturally grounded research and interventions. Many autism scholars agree that while the field continues to attempt to improve the number of diverse autism researchers, there is an immediate need to improve current and future autism research to be more inclusive and address the unique needs of autistic individuals with diverse marginalized identities.

In this perspective piece, we argue that researchers form and utilize an external diversity advisory board as one way to improve the inclusivity and participation of autistic individuals with marginalized identities in autism research and intervention development. As a point of clarification, this perspective focuses primarily on the inclusion of racial and ethnic marginalized identities. However, diversity advisory boards can and should be used to increase the representation of other marginalized identities in autism research as well including gender, sexuality, and dis/ability.

What is a diversity advisory board?

We define a diversity advisory board as a representative group of community members, scholars, policymakers, and area experts who specifically discuss and examine research and proposed interventions for accurate representation and consideration of underrepresented and marginalized identities such as racial, gender, sexual minorities, and dis/ability, who are often excluded from the research process. The inclusion of diversity advisory board members will vary based on the context and goal of the research being conducted. For example, a study intended to develop an intervention for a particular racial group may have a diversity advisory board that is primarily made up of individuals from that racial group but should look to include individuals with intersecting identities, such as those who also identify as sexual or gender minorities, or who have physical and mental dis/abilities. In doing so, the board can provide critical insights that will aid research in intentionally addressing issues with diversity and inclusion of these marginalized groups.

Using a community advisory board framework to inform diversity advisory boards

External consultation in clinical research, intervention development, and intervention evaluation is well-documented. For example, the use of community advisory boards is a common practice in clinical research and intervention research that looks to develop and implement interventions (e.g. Dababnah et al., 2021; Halladay et al., 2017; Smith et al., 2020). Specifically, community advisory boards inform research and intervention design and evaluation by empowering a small group of individuals who represent the community to be directly involved in the decisions being made during the research and implementation process (Newman et al., 2011).

However, while community advisory boards are an important tool for assuring that clinical research is community-engaged (Lawrence & Stewart, 2016), few studies specifically speak about the diversity of community advisory boards and their ability to adequately address issues of diversity and identity representation. Furthermore, community advisory boards often do not go far enough in addressing specific issues related to diversity and equity that are needed in autism research and intervention development. For example, Pierce et al. (2014) reviewed ethnicity reporting in three autism-related journals over 6 years and found that race and ethnicity were severely underreported and considered during statistical analyses. This approach led to many autism-focused interventions and practices not being transmittable to autistic youth who identify as Black, Indigenous, or people of color (BIPOC) among many other marginalized identities. Thus, the utilization of a diversity advisory board has the potential to go beyond ensuring the science is community-engaged and inform its acceptability, usability, adaptability, and engagement among racial/ethnic, gendered, sexual, and dis/ability diverse groups. By building on the community-engaged nature of community advisory boards, diversity advisory boards will be a separate and independent group that can specifically examine and suggest ways in which the research can better engage with diverse autistic groups, and how research and interventions can be adapted to address the unique needs of marginalized racial/ethnic, gender, dis/ability groups, and sexual minorities.

Boards designed specifically to address diversity have helped programs and institutions tackle many issues related to a persistent lack of diversity and inclusion. Developing similar models to engage and address issues of diversity in research could be key to addressing the lack of representation and adaptation of autism research. For example, Elsevier Publishing, a large scientific publishing company recently implemented a diversity advisory board to improve the inclusion of “sex and gender-based analysis among their numerous scientific publications” (Elsevier, 2021). A recent report by the publishing company states that since the implementation of the diversity advisory board, they have had a near 20% increase in women on their editorial board, a significant increase of more than 30% of women on all their corresponding journal advisory boards and have made improvements in the increased representation of women in the scientific fields relevant to each journal.

In addition, the University of Michigan Institute for Social Research developed a diversity board as a means of improving the diversity, equity, and inclusion of underrepresented and marginalized groups within the institute and in the research being conducted there. The institute described the board as being successful in raising the consciousness of employees and staff around issues of diversity and inclusion, improving inclusive practices in the work setting, research programs, centers, and the institute as a whole, as well as improving collaboration within the institute to center diversity-related issues (University of Michigan Institute for Social Research, 2021). Such examples show the importance and abilities of a diversity advisory board to identify and address issues related to marginalized identity inclusion.

We present three arguments for forming and integrating the use of diversity advisory boards in autism research and intervention development and evaluation. First, diversity advisory boards will encourage scholars and interventionists to be more intentional in considering how their intervention will work for culturally, racially, gendered, and dis/ability diverse groups. Second, diversity advisory boards will lead to more racially diverse samples of autistic participants if members of the board are incentivized to support recruitment efforts from their local communities. Finally, the regular use of diversity advisory boards can improve the research-to-practice gap (Boyd et al., 2021) by including a wider range of diverse community members in the early stages of autism research, including the development, evaluation, and implementation of interventions. This is especially relevant as more autism scholars move toward the use of effectiveness-implementation hybrid intervention evaluation designs in which clinical or real-world effectiveness and implementation process outcomes are being evaluated simultaneously (Curran et al., 2012).

Intentional consideration of diverse identities

The use of a diversity advisory board throughout the research and implementation process calls for researchers to be intentional about how their research and interventions will work for culturally and racially diverse groups, among other marginalized identities. The board can identify diversity issues in all aspects of the research ranging from concerns with diversity in the scientific design teams, lack of diversity among research participants, to racial and ethnic contextual issues in the implementation of an intervention. However, the field does not yet have standardized practices for utilizing a diversity advisory board in the development of interventions and supports for autistic individuals. This oversight is problematic because of identified disparities in racial and ethnic representation in autism research (e.g. West et al., 2016). Given this lack of diversity and inclusion in the research process, scholars and interventionists who study autism will benefit from strategically implementing a diversity advisory board that oversees each stage of research and examines it for issues of diversity, inclusion, and equity. The same diversity advisory board could then be used repeatedly throughout the research process to provide ongoing feedback and recommendations. Utilizing the same board throughout the research and implementation process will help ensure that members of the board are intimately familiar with the research and will offer a consistent presence across the lifespan of the study. Furthermore, as autism research continues to adopt a more intersectional approach, as it has over the past 5 years (Cascio et al., 2021), intentionality regarding diversity will continuously become more imperative as autism research attempts to support the needs of a growing diverse population. The implementation of diversity advisory boards will be key in aiding scholars in being intentional in addressing this call.

Increase representation in research participants

Before discussing our second argument, it is important to understand the concept of intersectionality and the role of intersectionality in autism research. Intersectionality speaks to the ways an individual embodies multiple marginalized identities leading to unique forms of oppression and marginalization associated with the social context of these identities (Crenshaw, 1991). Recent research by autism scholars has begun to consider the impact that other marginalized identities have on autistic individuals. For example, the Shattuck et al. (2018) found that Black autistic youth, as compared to White autistic youth, were more likely to reside in low-income or single-parent households, have unmet healthcare needs, and report greater difficulty with language and speech skills (Shattuck et al., 2018). In addition, a scoping review specifically examined the needs of Black autistic women and girls and concluded that there is a greater need for an intersectional approach that considers Black autistic women and girls in autism research (Lovelace et al., 2021). These recent studies show a growing focus on the importance of utilizing an intersectional approach in autism research by including a greater number of diverse autistic individuals in the research and intervention development and evaluation.

Thus, diversity advisory boards will aid in the recruitment and proper integration of diverse autistic individuals with intersecting identities into research studies. Board members can be properly incentivized to support recruitment efforts from their networks and local communities. The onus for proper incentivization falls on the researcher and is discussed more in-depth later in this perspective. Diversity advisory boards’ support in improving recruitment efforts for diverse autistic individuals will encourage autism researchers to truly utilize an intersectional approach because there will be a greater number of diverse individuals intentionally included in the sample of participants. Furthermore, the advisory board can provide guidance on how to properly integrate these individuals into the research. To properly integrate these identities in our research, we not only need to be intentional in considering the effects of our research and interventions on BIPOC autistic individuals, but we also need to be intentional about recruiting and integrating these individuals into our research as active decision-makers and not tokenized participants (see Carras et al., 2022).

Addressing research-to-practice gap

The use of a diversity advisory board will significantly aid in closing the research-to-practice gap (Boyd et al., 2021) because this approach calls for the intentional consideration of contextual factors related to identity. The consistent consideration of these contextual factors is key aspects of implementation science that seek to improve the integration and sustainability of clinical interventions into the community setting (Bauer & Kirchner, 2020). Overall, diversity advisory boards have the potential to ensure that these contextual factors are consistently considered and integrated throughout the research, development, evaluation, and implementation process for interventions designed to support the autism community. When considering the rapid growth of clinical trial designs such as effectiveness-implementation hybrid designs (Curran et al., 2012), the importance of understanding community, cultural, and social identity context during the development of an intervention, as opposed to during the implementation phase, becomes more apparent. A diversity advisory board will ensure that these contextual factors are constantly being considered during each phase of development which will improve the implementation process and thus lead to greater adoption of interventions in these communities.

Brief guidelines for selecting, maintaining, and engaging with a diversity advisory board

We see the role of diversity advisory boards in autism research as instrumental to the increased integration of autistic individuals with diverse marginalized identities in our research and intervention development. Therefore, in advocating for the use of diversity advisory boards in autism research, we want to provide brief guidelines for researchers to select, maintain, and meaningfully engage with a diversity advisory board. First, identifying individuals to join a diversity advisory board should be done with an intentional focus on having representative identities of marginalized groups within the autistic community; this includes race, gender, sexuality, dis/abilities, and autistic individuals with a range of support needs.

The diversity advisory board, to the extent possible, should include experts in the areas of autism research, autism advocates, autism and mental health professionals, policymakers, community members, and autistic individuals, with intersecting marginalized identities. Some members of the diversity advisory board may have a unique role in that they can often identify as insiders representing diverse and marginalized groups through their identity and advocacy, while also being in a position that may make them more of an outsider to the community such as being in the role of a policymaker or a scholar. However, when considering those in these intersecting roles, their unique position can have multiple benefits. Their insider knowledge can aid in improving diversity, while their expertise from their held position can provide insight into best practices for implementation, impacting social and public policy, as well as fundability for studies. The most important aspect of the diversity board is that it is inclusive of diverse identities and is used to its full potential to make autism research more inclusive and impactful for diverse autistic communities.

Furthermore, no member of the board should feel tokenized for their identity and therefore every effort should be made to gain a broad range of representative identities. It is the responsibility of the principal investigator and the research team to ensure that all board members know that their views, opinions, and shared perspectives are meaningful and genuinely considered. This can be done by providing a shared document with members’ suggestions and corresponding actions taken in the research. In addition, a diversity advisory board should be engaged throughout the research process. Therefore, there is potential to continuously show members how their views and suggestions are being utilized throughout the research. Overall, board members should be able to provide useful insight into how to best engage and integrate autistic individuals with diverse identities. Furthermore, members of the board should know that their views and opinions are valued and add value to the research that is being conducted.

Regarding incentives and strategies to recruit and maintain members of the diversity advisory board, researchers should consider means beyond monetary compensation. Norris et al. (2007) in discussing research partnerships with communities stated that “building relationships and effective collaboration requires time, patience, physical presence, respect, and commitment” (p. 29). The same can be said about researchers’ partnerships with members of their diversity advisory board. Providing formal training in community settings and organizations that advisory board members are a part of demonstrates a commitment to serving and supporting their communities. In addition, researchers can provide talks and presentations, support members’ organizations in seeking and applying for grants, as well as offer free or discounted access to fully developed interventions to board members and their organizations.

In terms of the appropriate time to engage and incorporate a diversity advisory board into research and intervention development, each research project is unique, therefore there is no one-size-fits-all approach. However, providing updates and summaries of diversity board meetings as well as recent findings, and study updates are key to maintaining continuous communication that will aid in keeping board members engaged. In addition, researchers should meet with their board on a consistent schedule and utilize them at each significant junction of the research project. The members of the board should be aware of the planned trajectory of the research project and their expected participation. Moreover, researchers can and should build funding for diversity advisory boards into grant budgets and grant activities. Federal funding agencies such as the National Institutes of Health (NIH) over the past decade have called for increased diverse representation in its funded research, both in the role of researchers and research participants. The use of diversity advisory boards is an excellent way of genuinely considering and integrating diverse identities in our research and intervention development. While we do not go as far as calling for the requirement of diversity advisory boards in autism research, this article should be considered a call to action for autism researchers, interventionists, and funders to show true intention in improving the equitable inclusion of diverse marginalized identities in autism research by implementing the use of diversity advisory boards in our work.

In conclusion, the use of a diversity advisory board in autism-related research and intervention development is a key tactic in addressing ongoing issues with diverse identity representation in autism research. The current direction of discourse within the field of autism research has begun to highlight the importance of inclusion, equity, and intersectionality in the work we do as scholars and interventionists. However, little work has described actual ways to thoroughly address issues of diversity throughout the entire research process. The integration of diversity advisory boards from the conceptualization stage of a study until its conclusion will push researchers to be intentional about addressing issues of diversity, improve recruitment efforts of diverse autistic individuals, and improve the effective implementation of autism-related interventions within the community.

Footnotes

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Support for this work was provided by a grant to Dr. Dale Olsen (R44 MH080496) from the National Institute of Mental Health as well as a grant from the National Institute of Mental Health to Dr. Matthew J. Smith (R34 MH111531).

ORCID iDs

Ed-Dee G Williams

Matthew J Smith

Brian Boyd

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