Authors: Cailee Nelson and Britney DonovanThis week the B-RAD lab compared how different neuroimaging modalities (e.g., electroencephalography, functional near-infrared spectroscopy) are inclusive of minoritized populations, particularly individuals with afro-textured hair. More specifically, our discussion was centered around a recorded webinar from NIRx, a leading functional near-infrared spectroscopy (fNIRS) company, that presented research findings from a study focused on improving inclusivity of individuals with afro-textured hair. fNIRS, like electroencephalography (EEG), situates a cap fitted with optodes over a participant’s head. Unlike EEG, however, fNIRS shines infrared light on the scalp which is absorbed by hemoglobin in the brain. Depending on the amount of light absorbed, researchers can determine how certain brain regions were activated during a task. As such, fNIRS data quality can be impacted by hair thickness and texture, hair color, and skin color. Therefore, individuals with thicker hair, afro-textured hair, and darker skin tones are excluded from fNIRS studies more often than individuals with thinner, lighter hair and lighter skin tones. The webinar first touched on how fNIRS research under-reports demographic information and reasons for excluding individuals. For example, many studies report excluding participants due to poor data quality which could be problematic if they are systematically excluding participants of color. Additionally, the webinar demonstrated how interventions like cornrowing hair can improve fNIRS inclusivity for individuals with afro-textured hair. As a group, we determined that an overall solution to improving inclusivity in fNIRS research and neuroscience research, more generally, is to design neuroimaging technology in a way that is inclusive of all races and ethnicities. However, given the number of resources it may take to improve technology, researchers should focus on shorter-term solutions they can immediately implement in their own lab (e.g., cornrowing hair, hiring hair specialists, compensating participants for hair care). While these shorter-term solutions may require researchers to extend the amount of time a participant is in a session and how they compensate participants, it is a necessary step toward repairing the rift between science and Black and other minority communities. These solutions will also allow researchers to include more representative samples in their studies—ultimately improving the quality of the science.
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Authors: Britney Donovan, Cailee Nelson, & Jackson McFaddenIn this most recent discussion, we focused on the difference in preference between identity-first and person first language in the context of autism research and personal use among autistic people. The article “Preferences for identity-first versus person-first language in a US sample of autism stakeholders” (Taboas, 2023) was our starting point, covering a large (n=728) sample including autistic adults, family members or friends of an autistic person, parents of an autistic child/adult, professionals who work closely with autistic individuals, and people who had little to no experience with the autistic community. The results of this study showed a preference for identity-first language (IFL; e.g., “an autistic person”) in autistic adults and parents, a preference for person-first language (PFL; e.g., “a person with autism”) in family/friends and professionals, and an equal preference among those with no experience.  PFL has largely been promoted since the 1970s and 1980s as a way to emphasize the person and not their disability, aiming to prevent stereotypes and negative perception. Since, it has been adopted as the mainstream “appropriate” terminology by hospitals, schools, clinics, and organizations like the American Psychological Association. In contrast, self-advocates and other scholars believe that autism is not something you can separate from the individual, and the use of PFL does just that. Additionally, by using an unconventional word order, it may draw even more attention to the individual’s disability, causing more stigma than mitigating it. The concept of IFL keeps a person attached to something that is inseparable from them and seeks to not stigmatize that.
As a group, we discussed what we already observe other researchers, like those involved with the International Society of Autism Research (INSAR) or our own Carolina Autism and Neurodevelopment (CAN) Research Center, practice and how to implement the information presented in this article. These two organizations use a primarily IFL language approach in their writing. While many autistic individuals do prefer IFL, there are still some who do not. It is important to recognize this is not a one-size-fits-all situation and to be nuanced in our approach. Identity is very complex and can come in multiple layers, each affecting and influencing any given person differently. For that reason, using both IFL and PFL terminology in our writing is a good way to acknowledge these complexities. However, listening to autistic individuals you work with directly and using what they prefer is most important. Taboas, A., Doepke, K., & Zimmerman, C. (2023). Preferences for identity-first versus person-first language in a US sample of autism stakeholders. Autism, 27(2), 565-570. https://doi.org/10.1177/13623613221130845 Authors: Liv Mace, Kendall Nelson, and Sophie Cramer-BenjaminOur recent lab discussion centered around the current announcement by the Department of Health and Human Services and the Trump administration linking acetaminophen use during pregnancy to autism diagnoses. We discussed the source of this information: a meta-analysis published in the Environmental Health journal titled “Evaluation of the evidence on acetaminophen use and neurodevelopmental disorders using the Navigation Guide methodology”. We also reviewed a CNN News interview with the FDA commissioner, Dr. Marty Makary, and the Director of Yale Developmental Disabilities Clinic, Dr. James McPartland. In the news segment, the FDA commissioner referenced the journal article and falsely stated that this provided proof that there is a causal link between acetaminophen use and autism diagnosis. Later in the news segment, Dr. McPartland emphasized the complexity of autism and addressed some of the misinformation being spread.
As a lab, we discussed the dangers of misinformation, especially when they are espoused by governmental bodies and concern marginalized populations (e.g., disabled people, pregnant people). We also talked about our role as autism researchers in stopping the spread of misinformation in this area in particular. To this end, lab members described the importance of communicating our science to the public, connecting with local communities, using approachable language, and emphasizing ‘real-world’ applications to our research. Finally, lab members addressed the FDA commissioner’s claims directly. Lab members expressed disappointment from the use of the term “epidemic” to refer to the autistic community, as autism is not a disease. Further, the rise in autism diagnoses and visibility of individuals with higher support needs in recent years is due to more inclusive diagnostic criteria, improved identification of autism, increases in access to services, a reduction in the practice of institutionalization, and improved medical care for individuals with complex medical needs (D’Astous et al., 2016; Stringfellow et al., 2024). References D’Astous, V., Manthorpe, J., Lowton, K., & Glaser, K. (2016). Retracing the historical social care context of autism: A narrative overview. The British Journal of Social Work, 46(3), 789–807. https://doi.org/10.1093/bjsw/bcu131 Stringfellow, M. K., Fields, N. L., Lee, K., Anderson, K. A., & Brokaw, E. (2024). Healthy aging and older adults with autism: A scoping review. The Gerontologist, 64(11), gnae026. https://doi.org/10.1093/geront/gnae026 Authors: Jake Arcement & Liv MaceOur recent discussion follows a TEDx talk given by Carrie Beckwith-Fellows, who describes her personal experience with the struggle to receive an autism diagnosis. The talk explores her journey towards discovering her identity, but first, she explores the question of what autism is and is not. Elucidating the Autism Spectrum A widely held public misconception about the spectrum of autism is that it is a straight line, ranging from mild to severe. Instead, Beckwith-Fellows describes the spectrum as more of a “kaleidoscope” or color wheel (see image below), consisting of several traits that autistic people identify with. This includes repetitive behaviors, sensory issues, social communication, stimming, and executive function.  Another misconception that she points out is the meaning of “high-functioning” and “low-functioning” autism. These terms are often misused to describe an autistic person’s speaking abilities, when they actually refer to an individual’s IQ (above or below 70). This misunderstanding has often minimized Beckwith-Fellows’s experience with autism, as she has excellent speaking abilities yet struggles to cope with the intensity of her emotions. What autism is for Beckwith-Fellows is anxiety, intense emotions, and trying everything she can to assert control over her environment. She is unable to put a name to her emotions despite the intensity with which she feels them. To cope with her anxiety, she asserts strict control over her daily routine, which, if interrupted, will leave her overwhelmed and paralyzed with anxiety. Masking and Its Mental Health Consequences Despite the severity of her symptoms, Beckwith-Fellows was not diagnosed until she was 35 years old. This is primarily due to her proficiency in masking, the unconscious effort autistic people make to hide their traits to fit social expectations. Social constructs are taught to children from a young age, and for Beckwith-Fellows, this meant learning to copy the behavior of others and hiding her stimming. Despite stimming being such an important form of self-regulation and emotional expression for autistic people, it is discouraged and viewed as socially unacceptable. Autistic children are inadvertently taught to hide their autism, but this is exhausting and can damage their sense of identity, potentially leading to serious mental health consequences. Beckwith-Fellows developed an eating disorder and intense suicidal ideation, moving between different inpatient facilities and taking various prescribed medications that did not work. Masking, which Beckwith-Fellows describes as an unconscious behavior she can’t “switch off”, hid her diagnosis from clinicians for over a decade. Finding Her Voice and Building Community After withdrawing from the mental health system and seeking an autism evaluation, Beckwith-Fellows was able to confirm her suspicion and embrace her autistic identity. She now shares her unique voice through her blog and website, offering support to other adults diagnosed later in life. Battling Biases and Offering Connection Beckwith-Fellows’s story is an important reminder of the biases we have surrounding autism, and that these affect even our clinicians. Misconceptions about gender and level of functioning in autism not only delay life-changing diagnoses but further mask the identity of autistic people. The comment section of the video highlights the importance of sharing stories like this, especially using the internet/social media as a platform for connection. Many comments from people, particularly women, who were also diagnosed with autism later in life expressed similar experiences with the same struggles as Beckwith-Fellows. With isolation being a strong contributing factor to suicidal ideation and self-harm, bridging these gaps in communication can be lifesaving. Shifting From the Medical to the Social Model The last key piece of our discussion involved the medical vs. social model of disability. In the context of autism, the medical model views autism as a disorder or deficit, focusing on reducing autistic behaviors to better fit into a neurotypical world. On the other hand, the social model shifts the emphasis to the environment, arguing that limiting social barriers such as rigid social expectations, lack of acceptance, and lack of accommodations can best support autistic people to use their strengths to succeed in the world. We argue that the social model not only leads to more effective interventions but also offers further support for the mental and emotional well-being of autistic individuals. Normalizing sensory responses like stimming will be an important step, but redefining social norms must begin with education and combating the misconceptions surrounding autism. There has been some progress, for instance, with the normalization of fidget toys in the classroom and the recognition that not all children can sit at a desk all day. However, there are many more efforts needed to shape our society into a more inclusive place for those with autism and other neurodivergent abilities. Watch theTEDx Talk below: Author: Shelby CoxTitle: Diagnostic disparity of Autism diagnoses between sexes.
In this discussion, we focused on the variation in manifestation and diagnostic disparity of autism spectrum disorder (ASD) between sexes. In a review titled “Sex Differences in Autism Spectrum Disorder: Diagnostic, Neurobiological, and Behavioral Features” the authors analyzed the discrepancies in sex ratio of ASD diagnosis and its manifestations of core symptoms along with the discussion of current and past theories that have been used to explain this gap. The prevalence of autism spectrum disorder is about 1 in 44 children and is diagnosed in boys 4.2 times more than in girls. This discrepancy is interesting considering that there is not a very pronounced sex difference in Autism screening. This means despite receiving the same testing, boys are more likely to receive an ASD diagnosis. The standardization of diagnostic tools and criteria has been primarily based on presentation in males, which likely contributes to a lower rate of diagnosis in girls compared to boys. Additionally, it has been found that women diagnosed with ASD later in life often had a history of multiple other previous diagnoses before ASD, whereas men usually did not. After explaining the differences in diagnostic rates, the authors then describe common variation in core symptoms that make it more difficult for women to be diagnosed with ASD. Camouflaging, or minimizing the visibility of traits associated with ASD, is reported much more often in women with ASD, which could result in the disorder going unnoticed. Along with this, women with ASD commonly display more internalizing behaviors such as depression, anxiety, and other emotional issues than men with ASD who commonly display more externalizing behaviors such as aggressiveness and hyperactivity. Externalizing behaviors are more likely to be disruptive to others, especially at a young age in schools, making it more likely for young boys to be tested forASD. Following this, the article gives theories that have been used to rationalize the sex ratio discrepancy. The Extreme Male Brain Theory links ASD susceptibility to morphological differences such as the total size or volume, white and gray matter ratio, or hemispheric connectivity between male and female brains. This theory states that the male brain is more fit for systemizing, while the female brain is more fit for empathizing, and that ASD is an extreme of the normal male profile. Systemizing is defined as “the ability of analyzing a system and understanding the rules that govern it,” while empathizing is defined as “to identify mental states and to respond with appropriate emotions.” This indicates that a person with ASD would have a very good ability to systemize but is unable to empathize. A major issue with this theory is that it reinforces a negative stereotype that people with ASD lack remorse and ability to sympathize and empathize. In contrast, the Female Autism Phenotype Theory states that female specific manifestations of ASD do not fit the current conceptualizations of the disorder. This relates back to earlier mentioned differences in core symptoms as well as the idea that women with ASD have been found to show greater social motivation, capacity for friendship, and pragmatic social communication. Napolitano, A., Schiavi, S., La Rosa, P., Rossi-Espagnet, M. C., Petrillo, S., Bottino, F., Tagliente, E., Longo, D., Lupi, E., Casula, L., Valeri, G., Piemonte, F., Trezza, V., & Vicari, S. (2022). Sex Differences in Autism Spectrum Disorder: Diagnostic, Neurobiological, and Behavioral Features. Frontiers in psychiatry, 13, 889636. https://doi.org/10.3389/fpsyt.2022.889636 |