Author: Maya McCune
Earth 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.
Author: Jackson McFadden
For this week’s Inclusion in Neuroscience topic, our lab discussed how we as researchers can better communicate with participants and their families. Though there is a set standard of professionalism in neuroscience research, it is easy to overlook the most important aspect of conducting research: the participant!
Communication styles such as tone, word choice, body language, and expressions may seem like second nature, but throughout our discussion, we realized how important it was to remind ourselves of the messages we would like to put out. For instance, when greeting a participant, it might be relevant to consider the following questions:
We were also presented with another important question to consider: how can we best help to create a positive relationship between researcher and guardian? Naturally, it is important that our direct participant feels comfortable and confident. Especially when testing minors or participants accompanied by guardians, it is imperative that everyone present feels their best.
It is noted in literature that oftentimes parents or guardians may feel as if researchers do not take their expertise of their child seriously, which can create an uncomfortable environment. As we discussed in lab, it is important that we engage and incorporate the guardian’s reflection of their child’s behavior into the environment that we create during an experiment. It may be hard for a researcher to read cues of discomfort, stress, or other difficulty that a guardian may be familiar with. By working together with the participants, their guardians, and our fellow researchers, we can create the best possible testing conditions.
These few considerations are key in building strong, lasting relationships with those who participate in research. As one might imagine, these relationships can also serve to create better conditions for collecting data, which is always a plus!
Author: Mariana Orihuela
This week's Inclusion in Neuroscience topic was focused on learning to support historically excluded and marginalized research participants. To implement effective techniques that will help improve the B-RAD Lab’s work with these populations, the lab read an article about cultural and linguistic adaptations for families of people with disabilities (Sands et al., 2021) and watched a video on research distrust in historically marginalized groups due to previous violations of informed consent. While discussing these resources during our weekly lab meeting, the main themes that emerged were inclusion, language, and trust in research. Lab members mentioned how social media could be used to promote inclusion in research settings. They discussed how displaying participants’ reviews of research labs may increase transparency and verify the trustworthiness of a lab for future participants. Also, maintaining updated websites that clearly describe studies could provide potential participants an opportunity to investigate research labs before contacting a research lab to indicate their interest in study participation. To ensure that people from marginalized groups understand informed consent, cultural and language factors must be considered when recruiting participants from these populations and explaining informed consent; this is another way of establishing and maintaining trust in research. Before ending our discussion, the B-RAD lab agreed that to promote inclusion, they will be careful with their word choices, learn American Sign Language, prioritize reading and citing articles from diverse research teams, be transparent and clear about informed consent, and be considerate of their language tones.
Author: Danielle Raynor
For our weekly Inclusion in Neuroscience discussion, our lab members read the article “Do Different Kinds of Minds Need Different Kinds of Services? Qualitative Results from a Mixed-Method Survey of Service Preferences in Autistic Adults and Parents” written by Ariel M Cascio and Eric Racine. From this article, we learned that there are more inclusive and considerate ways to provide accommodations for the autistic community, such as advocating for services with multiple divisions that support each person’s specific needs. Additionally, we watched a video titled “Autism Service Dog Feature: Olivia's Story” that discussed a child's journey and how her service dog has helped her. This video describing Olivia’s story demonstrated that creating individualized services to accommodate an individual's needs can make a positive impact in their life.
In the lab’s group discussion, we emphasized that we should not generalize service preferences in participants, especially in autistic individuals. While some participants prefer “autism-specific services”, most participants in the study reported a preference for different services that cater to their own needs. As researchers, we cannot overgeneralize service preferences because autism is heterogeneous, and there is a wide spectrum of preferences. Neurodiverse individuals are vastly different, which is why our lab believes in understanding each person as an independent, unique individual and listening to their preferences and experiences. We also discussed how having services available in different environments is one of the most important aspects of service delivery, but this is currently an issue for many families. Availability of services for parents and their child varies based on geographic location and transportation. For example, the number of service options in many geographic locations do not match the density of autistic individuals in that same area needing services, which can lead to funding issues. Keeping possible roadblocks like this in mind, our lab has learned that we need to consider where the participants we work with are located and create plans for addressing these barriers. Lastly, we learned that although it is essential to consider and respect the needs of parents, we cannot gain true insight into the needs of autistic individuals just from parents' perspectives. It is crucial to also listen to autistic individuals. We want to support the autistic community by respecting their preferences and needs through individually focused services. We believe this is important in research and for working towards an inclusive society.