Liv MaceIn our recent discussion in neuroscience, we discussed the social and professional implications of late autism diagnoses. We read a systematic review by Russell et al. (2025), which revealed that the definition of a “late" diagnosis proved remarkably inconsistent across research literature, with studies presenting age ranges from 3 to 18 years. We think this was due to the paper’s consideration for inclusive samples. The average age of diagnosis across all the studies mentioned in the paper was 11.5, which surprised some of us as we had assumed most would have been diagnosed shortly after entering elementary school at the latest. We looked at the significance of diagnostic timing, and we agree that early intervention can optimize brain development and support if sought out early enough by the age of 3.
We also explored the value of late diagnosis by recognizing they offer more than just clinical categorization. While an early diagnosis is preferred, for many individuals a later diagnosis still provides crucial validation, explaining lifelong experiences of differentness. A diagnosis at any stage offers a framework for understanding their own personal experiences. Late diagnoses can also be valuable for individuals to afford healthcare since a diagnosis is necessary for treatment and interventions. Additionally, the emerging trend of self-diagnosis, which we believe has been amplified through social media platforms and an abundance of time available to people during COVID-19, brought a shift in our discussion. We talked about the delicate balance between respecting individual experiences while also maintaining scientific integrity. We do believe that self-identification can provide meaningful personal insights, but it can also present challenges for standardized research methodologies that require precise diagnostic criteria. Lastly, we discussed the outcome of self-diagnoses compared to traditional diagnoses and how this can contribute towards stereotypes. Ultimately, diagnoses need to be based on the DSM5 to uphold scientific integrity. We agree that diagnoses, especially in autism spectrum disorder, is not a simple process of checking diagnostic boxes but an exploration of individual experiences best guided by the help of a licensed professional. The process of diagnosing autism is complex, and our discussion this week aimed to acknowledge this to better understand and communicate with individuals who participate in our studies. Russell, A. S., McFayden, T. C., McAllister, M., Liles, K., Bittner, S., Strang, J. F., & Harrop, C. (2025). Who, when, where, and why: A systematic review of “late
0 Comments
Author: Rebecca Revilla For our weekly Inclusion in Neuroscience topic, our lab read Refining Research and Representation of Sexual and Gender Diversity in Neuroscience (Edmiston & Juster, 2022) and watched an interview with Dr. Karen Blair on LGBTQ+ Inclusivity in Research. These resources summarized a history of exclusion and mistreatment of LGBTQ+ individuals in research and presented helpful suggestions for how scientists can conduct LGBTQ+ inclusive research. Additionally, Edmiston and Juster (2022) explained the critical need for research in this area to continue to shift focus toward understanding the “effects of minority stress on the brain and on mental health” as well as the development of related interventions. During our discussion, several themes emerged as particularly relevant to conducting LGBTQ+ inclusive research within our lab.
In the B-RAD Lab, we are interested in understanding human development across the lifespan. This means we are often working with children and adolescents. Edmiston and Juster (2022) provided suggestions for conducting research on LGBTQ+ youths. Specifically, the authors described the care that researchers must take to avoid outing LGBTQ+ youths to their caregivers. This requires thoughtful wording of recruitment materials and consent forms. Our lab found this idea extremely insightful and discussed how we could be more cautious and considerate of our materials. For example, we ask participants to fill out a participant information form that has various demographic fields including options to share pronouns and gender identity. It will be important for our lab to create a specific plan for protecting this information and/or informing potential youth participants about these demographic questions during the assent process. A broad question that emerged for our lab after reviewing the materials is, what is the line between being inclusive and invading privacy? Specifically, when should we ask or not ask for demographic information related to sexual orientation and gender identity? One point posed by a lab member was to only ask for this information if it benefits the participants or will benefit others in study outcomes. Another lab member added to this point by comparing the typical collection of data on outward identities versus inner identities, such as why we would only classify participants using outward identities. Others challenged these ideas by stating that some people do not like to be labeled and questioned whether labeling identities is truly practical or beneficial. Although we did not identify a clear answer to this question, our lab connected this question with the importance of using mixed-method study designs and community-based participatory methods as we work to conduct more inclusive research. Author: Ashlan CheeverRecruiting a diverse participant pool is essential for conducting meaningful and representative research. However, many research labs face challenges when trying to include participants from lower socioeconomic (SES) communities, underrepresented genders, and marginalized ethnic backgrounds. In our lab's recent discussion on inclusion in neuroscience, we explored strategies to address and overcome these recruitment disparities.
Understanding the Barriers To begin, we acknowledged the barriers that individuals from these populations often face in participating in lab research. These include:
Building Trust and Visibility Rebecca, one of our team members, reminded us that simply posting flyers is often insufficient for attracting participants from these populations. Flyers may lack visibility and the necessary information for potential participants to feel comfortable reaching out. Credibility and rapport are vital in recruiting from populations unfamiliar with research practices. We discussed the potential benefits of attending community events and setting up tables where people can meet lab team members, ask questions, and begin building trust. Rebecca also suggested taking outreach efforts directly into communities, such as laundromats and public housing neighborhoods. This approach emphasizes the importance of personal connections in establishing a strong recruitment pipeline. Partnering with Schools and Organizations Another strategy involves partnering with lower SES school districts. Danielle shared her experience of navigating the approval process with school superintendents and forming connections within the school system. Addressing Cultural and Linguistic Barriers Jackson highlighted the importance of leveraging our lab's diversity to communicate effectively with potential participants. To overcome language barriers, we plan to print recruitment materials in multiple languages, ensuring they are easy to understand and include clear contact information. Expanding Outreach Through Social Media Finally, Cecilia recommended engaging with specific Facebook groups and other social media platforms to raise awareness of our lab among potential participants. Social media offers a way to answer questions, understand the needs of these communities, and build a broader online presence that can enhance recruitment efforts. Conclusion Inclusive research requires intentional efforts to reach underrepresented populations. By understanding the barriers these communities face and implementing targeted strategies, research labs can create a more diverse participant pool. This not only enriches the research process but also ensures that findings are more reflective of the broader population. As we continue to refine our recruitment strategies, the goal remains clear: to make participatory research accessible and inclusive for all. Written by Ezra Wingard and Ashlan CheeverInclusion and belonging in social spaces are inherently important on an individual and population level. It is through the communities with which we are connected that determines the trajectory of our growth and evolution as people. Historically, the realm of science and the environments it resides in (workspaces, schools, research labs) have been inaccessible to the greater public. Now with the rapid expansion of internet connectivity, once separate and distant communities can now meet and collaborate.
As the scientific community becomes more interconnected with larger and more diverse populations, leaps have been made in discovery and gaps have been identified, but not always addressed. The history of unethical and exclusionary practices have left many populations (women, minority ethnic groups, and gender diverse individuals) without a place for their stories to be scientifically heard. As scientists, our primary role is to further our understanding of the world through practical and reliable measures. Without the inclusion of all, the full story can never be told. The need for inclusion in science may not be as apparent to some as others, particularly if you yourself are not a part of a scientific community. However, I encourage you to consider how you yourself can be an important contributor to scientific study so as to see why the exclusion of others can be so deleterious.
As we go through life, we each create a story, and we believe that no person’s story is more or less important than others. Including as many diverse chapters as possible is the closest we can get to understanding the full book that is the human story. By broadening our lab’s focus on inclusion, we are:
While the efforts to provide equity and justice in research may be different depending on the subject of interest and lab standards, we believe that all can make impactful contributions. Some may be able to direct their biological and chemical research to aid drug development for those with rare genetic mutations, while another lab may use their psychological findings to inform policymakers and influence new laws. With our lab’s focus on Neuroscience and Developmental research, we are in a prime field to be just writers of our many participants’ stories as they are being written. We aim to accomplish this by being stewards of lifelong learning and maintaining an open mind to the views, opinions, and possibilities we have yet to encounter. We recognize that the systemic barriers that have historically excluded certain participants will not fall so easily, but with the intention of making “small ripples of justice” through our daily commitment to inclusion, we believe change is inevitable. Author: Maya McCuneEarth is an incredibly diverse place that is lush with various cultures, languages, and values. I was once told that diversity was what made the world go round. To this day, I still believe this is true. However, as with any discrepancies between individuals or communities, differences in thinking are inevitable. With differences in thinking, come differences in the way we aid and perceive others.
Culture-Bound Syndrome is the term used to describe these differences amongst cultures in how people interpret mental and developmental disorder symptoms. As a lab, we took a closer look at the ways in which autism spectrum disorder (ASD) is misunderstood because of differing cultural customs around the globe. In Western cultures, eye contact is often so intrinsically ingrained into our societal norms that most Westerners do not think twice over it. However, for many neurodivergent individuals, naturally adhering to this norm can be quite a challenge. Consequently, “masking” is considered a common compensatory strategy for neurodivergent individuals. Masking is a way for neurodiverse individuals to conceal their neurodivergent traits to fit in with what is deemed “societally acceptable.” Given that we know neurodivergence is found throughout the globe, it raises the question, “How might the definitions of normal behavior and abnormal behavior differ around the globe?” The article, “How Cultural Differences Affect Autism Diagnoses” , provided by our intern Maggie, explains that while eye-contact is encouraged in children of European-American Families, it is not considered a universal sign of respect. As such, irregularities in maintaining eye-contact are not seen as a symptom of autism spectrum disorder in different cultures. For example, children in southern Egypt are classified as “shy” when averting their gaze in the face of authoritative figures. Taking these findings into consideration, we proposed a variety of ways to combat the challenges that cultural differences may present within our lab. Alongside acknowledging and becoming more aware of cultural differences, we discussed the possibility of dissecting our laboratory tasks for cultural significance. In other words, asking ourselves if a task is appropriate and applicable outside of our own culture. Additionally, we discussed measuring cultural background by asking questions like, “What is your first language?” and “How many years have you lived in the United States?” In doing so, we can create a more personalized experience for lab participants that will aid in establishing a more inclusive community and improving the applicability of our research. |
AuthorB-RAD Lab Members all contribute to our articles. Archives
May 2025
Categories
All
|
|
Copyright: B-RAD Lab, Dr. Caitlin Hudac
|
Sitemap | Contact
|
Website updated: June 2024
|