Author: Maggie JohnsonDuring our lab meeting, we examined the portrayal of autism spectrum disorder (ASD) in media and how it affects both the autistic community and broader societal perceptions, with the foundation of our discussion on Theodoto Ressa’s article titled Histrionics of Autism in the Media and the Dangers of False Balance and False Identity on Neurotypical Viewers.
We started by discussing the shows mentioned in an article about autistic representation. One member admitted to having only watched clips of The Good Doctor but mentioned hearing negative feedback. They noted that the show oversimplifies autism, portraying the main character in a way that is overly dramatized, which detracts from its authenticity. Others agreed, highlighting that the writing felt more like a soap opera, and this sensationalization worsened the portrayal of an autistic character. On the other hand, another member expressed they had watched Love on the Spectrum, which was not mentioned in the article. They felt the show did a wonderful job breaking down stigmas by including therapist-informed conversations, but sometimes used comedic stylistic approaches that detracted from genuine challenges, uncomfortably infantilizing the cast.Another member shared their experience with Atypical. They enjoyed the show but acknowledged that it did not feature autistic actors, which detracts from its credibility despite tackling important themes surrounding autism. It was seen as a step forward, even though it missed the opportunity to involve individuals from the autistic community in the actual cast. We delved into the question of whether neurotypical actors can accurately portray autistic individuals, which opened a broader conversation about casting neurotypical actors for neurodivergent roles without proper consultation. One member brought up House MD, pointing out an example of a female character with ASD, which was portrayed tastefully and without much sensationalism, contrasting it with more problematic examples like The Good Doctor. This led to a reflection on how other media does not provide the same level of courtesy by casting individuals who understand the conditions they portray. Another team member noted that even if a show’s writing is not perfect, casting actors with lived experiences can still bring a layer of authenticity that would otherwise be missing. We agreed that there is a fine line between gaining a greater understanding and not capturing the nuance required. One of us pointed out that modern media tends to be rushed, often losing nuance in favor of fast production timelines, which negatively affects the accuracy of representations. We also explored the binary framing of neurotypical (NT) versus neurodivergent (ND) experiences and how that affects public understanding of neurodiversity. One of us remarked that the media often presents ASD in black-and-white terms—you either have it or you do not—without recognizing the full spectrum of traits and experiences that can go with autism. Another member pointed out that TikTok and other social media platforms are worsening this issue by promoting singular narratives about autism, reinforcing stereotypes rather than promoting a spectrum-based understanding of ASD. This led to a broader discussion on the polarization of neurodiverse representations and how these extreme portrayals make it difficult for audiences to see the more "in-between" experiences that are just as valuable in understanding neurodivergent identities. Toward the end of our discussion, we explored what “success” looks like for neurodivergent individuals in media. One of us expressed a desire to see portrayals of autistic adults who are thriving, who have accommodations, and who are self-aware, without autism framed as a hurdle they must overcome. However, another member cautioned that we should be careful about defining success, emphasizing that it should not always be measured by neurotypical standards. Instead, success should be individualized, focusing on small victories and lived experiences. In conclusion, we agree that media representation is crucial in shaping societal beliefs of autism. There is still much more work to ensure these portrayals are diverse, correct, and respectful. The portrayal of autism as a single, narrow experience does a disservice to the community, and there is a need for more nuanced, spectrum-based representations that go beyond the current tropes of savant syndrome and overcoming struggles. We also acknowledged the reciprocal relationship between media and society, where media both reflects and influences societal norms. If the media continues to rush out content without consulting the communities they are portraying, we risk perpetuating harmful stereotypes and missing the opportunity to foster a deeper understanding of neurodiversity.
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Author: Lucia VidalAs our BioGENE study begins to unfold, we believe it is important for our lab to deepen our understanding of genetic testing. This week in our lab, we watched a video on the disparities in genetic testing and discussed some of those issues. The topics included socioeconomic status, prevalent mistrust, and logistical barriers. Much of what we know about genetics comes from research on predominantly white, Western populations. This skews the data and leads to less accurate diagnoses for people from other ethnic backgrounds. 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: Lucia VidalA policy brief is an outline of a problem or topic being researched. Policy briefs are meant to condense information and are written in a format suitable for the general public, particularly those who influence policymaking. They are a way for readers with no background knowledge to easily understand what is being researched and how it can benefit the community.
During our previous lab meeting, we discussed the importance of policy briefs and how they can benefit our lab and our research populations. To begin, our lab discussed the general ways a policy brief could help convey information to the public. For example, we discussed startup programs wanting to receive help from the government. Oftentimes, these programs are trying to convince people in government who are not fully knowledgeable on the topic they are presenting, especially if it is part of a specific field not relevant to their line of work. Our lab analyzed how a policy brief could essentially become the “essay” one could write to better explain the information. Another example mentioned was wanting to place an intervention in a hospital. Although doctors and chiefs of the hospital may understand many of the terms and reasons for wanting to implement the intervention, the managers or business partners of the hospital might not. A policy brief could make the message clear and concise for the reader who may not fully understand the topic. Next, we discussed some ways to make a policy brief better suited for the general public. We expressed the importance of using simple and general terms, being organized (e.g., bullet points), and concisely stating the main goals. Policy briefs are meant to be organized into different sections including the issue, background, approach, and overall results. As discussed during our meeting, we believe these sections should be organized using vocabulary anyone can understand. We also mentioned the use of boldface for more important words or sentences within the policy brief. Using boldface will make the most important ideas stand out. Lastly, we discussed how creating a policy brief could help us better communicate the research our lab does to the public. We discussed how throughout the process of trying to persuade the community to sign up for a study, we often struggle to explain EEG and neurodevelopment research in a way the general population would understand. Through the discussion of policy briefs, we concluded that a policy brief would be a better way to explain what our lab is doing and why individuals would be a good fit for a study. Author: Cailee Nelson, Ph.D. This week in the B-RAD lab’s inclusion in neuroscience discussion, we considered how to bridge neuroscience techniques with core principles from community psychology. Community psychology is a relatively new field that emphasizes examining psychological topics in a context that is outside of the individual. For example, community psychologists might ask: “How do the systems a person exists in influence their psyche and overall well-being?”.
To aid in our discussion, we used this website to better understand the 10 core principles emphasized in community psychology. While several principles stood out to us, we spent a lot of time discussing the core principle of interdisciplinary collaboration. This principle emphasizes involving many different members of the community in research practices. While the lab agreed that it seems like common sense to implement this type of practice, we realized this does not always happen. It was pointed out that researchers should not be “parasites”—only taking information without giving anything back to the community. To understand how we can better do this as neuroscientists, the lab discussed ways to get the community involved in our research (e.g., community outreach events, presenting our findings to the community frequently), appropriately crediting our research participants, and creating teams to help translate and enact change in the community. Finally, the lab addressed why communities may not always trust researchers by discussing well-known, unethical experiments (e.g., the Tuskegee experiment) that had long-lasting, detrimental effects on the communities that were involved. We established that it is the researcher’s duty to build trust by showing up for the community in different ways and to not take advantage of any trust that already exists. As the B-RAD Lab often recruits children to participate in our research, we considered ways we could do this for our participants’ communities and decided that attending different school events like football games, school plays, or band performances might help. Overall, it is clear that researchers interested in understanding human cognition and behavior must consider not only the individual participants but also the different communities they exist in when designing, implementing, and disseminating our research. |
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