Authors: Jackson McFadden & Liv MaceThis week, the B-RAD lab discussed the importance of protecting both research participants and research staff from emotionally distressing subject matter during active data collection and analysis. To what extent should we aim to structure such work to protect the very people most vulnerable to adverse outcomes? To what extent should we as professionals be prepared to engage in difficult conversations and heavy subject matter?
A 2025 article by Kennedy et al., proposed the idea that emotionally safe research begins at the development stage. The GENDER-Q Youth is a participant-response outcome measure (PROM) that investigates gender diverse youth and adolescents’ experiences regarding receiving gender affirming care. Given the potentially sensitive nature of these topics, the research team took considerable care to construct their interviews to bilaterally protect both participants and their sensitivities and the research team and their own. Examples of such considerations follow: “Does the [research] team require any training or resources to recognize and manage potential emotional safety concerns?”, “What are the potential threats to participants/research team’s privacy and safety during the recruitment process?”, “Are interviews being scheduled when the participant and team would have access to further necessary support?” Lastly, the team inquired about the potential for troubling emotional events regarding data analysis and potential qualitative coding of sensitive topics. While thought-provoking, the B-RAD team offered interesting points both in support and in dissent of the perspective shared by the article's authors. Researchers always possess the ability to be more mindful of the construction of tasks and procedures in such a way as to encourage healthy boundaries and support chains. On the other hand, it was argued that it is unrealistic to expect professionals in mental health adjacent fields to entirely “flowchart away” the very real difficult conversations and emotions that can arise when discussing sensitive topics or even not-so-sensitive topics. It is important to recall that all participants’ lives are rich and colorful and sometimes those colors can be dark. As people-facing researchers, there is an understanding that we should expect that some interactions will not be so positive. Even in the face of someone having a hard day, we should be prepared to hear those worries, sympathize, and move forward in a supportive manner. Another point made by the B-RAD lab is that protocol can certainly help in times of escalated emotion or threats to safety. It was noted that the GENDER-Q PROM framework was specifically designed for the context of virtual interviews, which may pose distinct difficulties to in-person interactions. There certainly exists a possibility that team members may face difficult encounters, discrimination, or even participant health crises. In this case, research teams should exercise caution that staff, administrators, and research assistants have received ample training on how, who, and when to report an incident with a participant. As it appears, the responsibility of the research team is many-fold: to protect data, lab staff, and certainly research participants. Ultimately, protections against emotionally distressing subjects may not always be eliminating chances for such topics to present themselves, but fostering an environment where honest answers are met with warm but professional concern if necessary, and researchers are appropriately equipped to understand when it is time to be the supporting force, and when it is time to seek support. References: Kennedy, S.L., Jack, S.M., Johnson, N. et al. Prioritizing Participant and Research Team Emotional Safety During Data Generation and Analysis in Qualitative Patient-Reported Outcome Measure Research: Development of a Framework Informed by the GENDER-Q Youth Study. Patient 18, 597–608 (2025). https://doi.org/10.1007/s40271-025-00756-4
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Authors: Veronica du Plessis & Liv MaceAttention-deficit/hyperactivity disorder (ADHD) is a very well-known diagnosis, having garnered a lot of attention and research over time. Even so, most people hold the perspective of ADHD being purely hyperactive in nature, often overlooking the inattentive element of the neurodevelopmental disorder. Hyperactivity is more easily observable and more common in males than in females, while predominantly inattentive ADHD (ADHD-PI) is more common in females. In fact, the ratio for diagnosis between males and females is 4:1. This is due to the neglect of inattention as a presentation of ADHD, thus resulting in females being overlooked when it comes to ADHD diagnoses. Karley Dobronski, a college-age female, shared her personal story through a TEDTalk titled “Invisible struggle of ADHD in women and girls”. In this talk, she spoke of her own personal experience in which her ADHD was overlooked, until she was finally diagnosed in college. She had spent most of her life being treated for previously diagnosed depression and anxiety, feeling as though something was inherently wrong with her, and she was the reason behind her academic challenges. She noted how others recognized her symptoms but misattributed them as personality traits, labeling her as quiet, disorganized, careless, and airheaded. She discussed how her diagnosis of ADHD in college helped her recognize and accept her full, authentic self, in turn improving her self-esteem. Martin et al. (2024) further supported the observable gendered discrepancies in ADHD diagnoses, stating that females are diagnosed at a later age and often delayed in receiving ADHD stimulant medication. Furthermore, females were more likely to be diagnosed with co-occurring anxiety, depression, and other mental health diagnoses, often having been diagnosed before ever being considered for ADHD. Females were also more likely to receive antidepressant medication both at a younger age than males and before receiving a stimulant medication prescription (Martin et al., 2024). This aligns with points made by Dobronski, stating that the average age of ADHD diagnosis is seven in males and twelve in females. She also pointed out the tendency for females with ADHD to develop emotion-focused coping mechanisms, mood disorders, dysregulated eating, and higher rates of self-harm and suicide. These harrowing facts inspired our discussion, in which the validity of ADHD diagnostic criteria, the controversy between early and late diagnoses, and the debate between comorbidity of diagnoses or misdiagnoses were addressed. With the advent of co-occurring diagnoses being so prevalent in females with ADHD, the question arises whether these diagnoses are comorbid or perhaps the result of a misdiagnosis. The answer is not clear, as it depends on a multitude of factors. Historically, research on ADHD was founded on men, in turn dismissing female presentation due to lack of scientific inquiry on the topic. The consideration that biological predisposition to depression and anxiety is different from the neurodevelopmental nature of ADHD suggests that comorbidity is possible, if not likely. On the other hand, the advent of a misdiagnosis and living with unsupported ADHD could have a causal effect on depression and anxiety, either developing or heightening the presentation of the diagnosis due to added environmental stressors and the debilitating internalization of the symptoms. These effects push for the need of earlier diagnosis, as it could prevent further decline in mental health. However, the question of how early arises. In addressing this, one must recognize that a diagnosis is separate from an intervention. The ideal pathway is to begin with a diagnosis, followed by behavioral interventions and parental management training. Following this, medication can be introduced, slowly increasing dosage if needed while continuously reinforcing behavioral management techniques. Finally, one wonders what can be done to address and diminish this gendered discrepancy in ADHD diagnosis. We agreed that education is key. Approaching an ADHD diagnosis is most effective from a holistic and intersectional lens, considering all types of ADHD that may be present and understanding where symptoms interfere, especially contextually. By continuously raising awareness and increasing education, we can generate a new generation of competent care providers. References Dobronski, K. (2025, March). Invisible struggle of ADHD in women and girls [Video]. TED Conferences. https://youtu.be/Px_EPsMt71Y?si=vYVFVxzB-DQy6qpm Martin, J., Langley, K., Cooper, M., Rouquette, O. Y., John, A., Sayal, K., Ford, T., & Thapar, A. (2024). Sex differences in attention‐deficit hyperactivity disorder diagnosis and clinical care: A national study of population healthcare records in wales. Journal of Child Psychology and Psychiatry. https://doi.org/10.1111/jcpp.13987 Authors: Wae Man Chan, Veronica du Plessis, & Liv MaceOur recent discussion focused on an article titled “Diagnostic Overshadowing: A Delayed Diagnosis of Autism Spectrum Disorder in a Child who is Deaf,” which highlighted the concern of how similar and overlapping traits between autism and hearing loss can lead to a delay in accurate diagnoses. When clinicians attribute behaviors to only hearing impairment, characteristics of autism can be overlooked, leading to the missed opportunity for early support and intervention.
Why Diagnostic Overshadowing Happens: Diagnostic overshadowing can occur when symptoms of a pre-existing diagnosis actually reflect a separate condition. In healthcare, this can often affect individuals that present complex symptoms, such as co-occurring developmental delays, seizures, or sensory impairments. Clinicians may focus more on the most urgent or visible symptoms, such as hearing loss or seizure activity, rather than evenly assessing all the symptoms. In addition, not all diagnostic tools are adapted for people with multiple disabilities. For instance, standard assessments for autism spectrum disorder (ASD) may not accurately consider those that may be deaf or use sign language, since many assume spoken communication is the norm. Social cues in sign language, such as facial expression and eye contact, may carry different meanings than in spoken language, yet these distinctions are often unaccounted for in standardized tools like the Autism Diagnostic Observation Schedule (ADOS). Overlapping Signs of Autism versus Hearing Loss: Some traits of ASD and children who are deaf or hard of hearing (DHH) can be similarly presented. For example, differences in prosody, the pattern of rhythm or melody of speech, are common in both groups. This means that an individual who is deaf or hard of hearing may verbally communicate using a “deaf accent,” which might be mistaken for a speech pattern consistent with autism. Traditional diagnostic tools present another barrier. Assessments like the ADOS were developed with the assumption that those being evaluated did not have any hearing issues. They rarely consider sign language, interpreters, or alternative forms of communication. This lack of adaptation can lead to inaccurate evaluations and contribute to a lack of understanding of varying forms of social communication. The Impact of a Delayed Diagnosis: A delayed diagnosis of autism can socially, academically, and emotionally affect a child in almost every aspect of life. Without the recognition of their autistic traits, a child may feel misunderstood when in reality they need accommodation and support. Early identification allows families and educators to personalize interventions, including sensory supports and structured learning environments, further supporting autistic children to succeed and feel understood. How to Move Toward Better Diagnosis and Care: To work on reducing diagnostic overshadowing, clinicians need more inclusive diagnostic tools and broader training. Assessments must be adapted to account for co-occurring conditions, especially when differences in communication can play a significant role. Collaborations between audiologists, psychologists, and educators will help contribute to an integrated and coordinated approach that assesses the child as a whole person rather than a collection of varying symptoms. Lastly, education is equally important as clinicians must be trained to recognize the diversity of neurodevelopmental changes and how they can be presented across a spectrum. Clinicians should remain curious, reflective, and open to learning. Ultimately, collaboration is key in leading to better outcomes for many individuals. References: Dang, Q.-C., Hoffman, M., & St. John, R. (2024). Diagnostic overshadowing: A delayed diagnosis of Autism Spectrum Disorder in a deaf child. Journal of Early Hearing Detection and Intervention, 9(1), 17–21. https://doi.org/10.26077/ed17-2a01 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. 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 |