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
0 Comments
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 Author: Ashley Lopez-Hernandez Adolescence is a period of emotional complexity, filled with social interactions that shape a young person's identity and relationships. For autistic adolescents, one of the core challenges during this time involves interpreting emotional cues, especially facial expressions. This difficulty in reading emotions doesn't just impact social understanding it can also intensify feelings of anxiety and isolation. How Emotion Interpretation Differs in Autism Autistic adolescents often experience differences in how they perceive facial expressions, particularly in identifying whether an emotion is genuine or safe to approach. A 2024 study published by Bothe et al. found that autistic traits are associated with "...difficulty in perceptual discrimination, labeling facial expressions, discriminating the genuineness of facial expressions, and differences in making social decisions relating to facial expressions" regardless of whether individuals also experienced Alexithymia -the difficulty in identifying and describing one’s own emotions- (Bothe et al., 2024, p. 1333). This means that even without difficulty in recognizing their own emotions, autistic individuals may still struggle to assess whether someone is sincere or emotionally approachable. In particular, the study highlights that many autistic individuals were less accurate in evaluating smiles. It was found that "autistic-like social skills predicted less typical approach judgements of genuine, but not posed, happy expressions, reflecting a reduced willingness to approach genuinely happy faces." (Bothe et al., 2024, p. 1331). This can be confusing in social interactions, increasing the risk of misunderstanding individuals' intentions and emotions. Why Misreading Emotions Contributes to Anxiety For most, facial expressions provide valuable feedback about social safety, inclusion, and rejection. However, when facial cues are difficult to decode, this lack of clarity can contribute to heightened anxiety. Social environments become unpredictable when one cannot determine if a peer is being kind, sarcastic, judgmental, or indifferent. This uncertainty may cause autistic teens to withdraw from social situations or avoid interactions all together. Over time, consistent avoidance behavior can lead to the development of social anxiety or exacerbate existing anxiety disorders. A comprehensive study by Hunsche et al. (2022) supports this connection, noting that poor theory of mind- which refers to the ability to infer the thoughts, emotions, and intentions of others- as well as similar social differences “may lead to greater peer rejection or to a sense of unpredictability and confusion in social interactions, which may then contribute to the development of social fears."(p. 199). This contribution to social fears can drastically impact anxiety levels for some Autistic adolescence. Therefore, it can be inferred that when Autistic adolescents repeatedly misinterpret social feedback, it not only impairs relationship-building but reinforces a sense of being “out of sync” with the social world around them. Addressing Emotional Misinterpretation in Therapy Given the role of misinterpreting emotions in autistic anxiety, treatment approaches need to address both social cognition and emotional regulation. Theory of Mind (ToM) and facial emotion recognition interventions, when adapted for autistic youth, has shown significant promise. The Hunsche et al. (2022) study found that providing social skills training opportunities to autistic adolescence " ...may reduce the uncertainty and confusion of social interactions and provide the option to exercise neurotypical social skills when needed, the pros (e.g., greater social acceptance.."(p. 205). Interventions integrating facial expression training, emotion labeling, and social scripts can help autistic adolescents feel more confident in social environments. Building this foundation of emotional literacy can reduce social misinterpretations and, in turn, lower social anxiety levels. Conclusion Understanding emotions is a key component of social functioning. For autistic adolescents, differences in emotional interpretation are not merely a communication barrier; they are tied to experiences of anxiety. As research from Bothe et al. (2024) and Hunsche et al. (2022) demonstrates, acknowledging and supporting these differences through targeted interventions can lead to more meaningful social engagement and improved mental health outcomes. By validating the emotional experiences of autistic youth and equipping them with tools to navigate the social world, we move closer to a more inclusive and supportive approach to adolescent development. Bothe, E., Jeffery, L., Dawel, A., Donatti-Liddelow, B., & Palermo, R. (2024). Autistic traits are associated with differences in the perception of genuineness and approachability in emotional facial expressions, independently of alexithymia. Emotion, 24(5), 1322–1337. https://doi.org/10.1037/emo0001350
Hunsche, M. C., Cervin, M., Storch, E. A., Kendall, P. C., Wood, J. J., & Kerns, C. M. (2022). Social functioning and the presentation of anxiety in children on the autism spectrum: A multimethod, multiinformant analysis. Journal of Psychopathology and Clinical Science, 131(2), 198-208. doi: https://doi.org/10.1037/abn0000724 By: Janae HerseyThis week's article discussed Camouflaging in autistic adult populations. This qualitative study included the experiences of both clinically and self-diagnosed individuals, providing insight into their thoughts, feelings and motivations behind camouflaging. This study helps shed light on this widely unknown behavior.
Camouflaging is described as the act of appearing more social or mirroring the social behaviors of other people to blend in in social settings. While anyone can camouflage, this is an article specifically focused on autistic individuals. The dangers reported in this article discussed how engaging in camouflage on a daily basis was exhausting and stressful, leaving individuals feeling cognitively overloaded. They described that they felt as though their brains were always working. Others reported that they felt like they couldn’t meet their basic needs because camouflaging was so draining. Some reported feeling better after resting but noted that there isn’t always much time to do so. These reports explain why many individuals related camouflaging to poor mental health outcomes. Depression, anxiety, suicidal thoughts, self-harm, and negative alcohol behaviors were reported in response to avoiding their awareness of social self. The third danger reported was that others often failed to accept the individuals when they were no longer camouflaging. Because of this, individuals reported feeling like they had to keep camouflaging to avoid being bullied, abused, or socially excluded. Not wishing to forfeit social acceptance, individuals continued even despite feeling inauthentic. As a result, many reported that the fear of losing social acceptance led them to isolate themselves completely. The last danger that was discussed was that camouflaging creates unreal perceptions of people with Autism. What the participants meant by this was that other people often do not believe that they are autistic, that they do not get enough recognition of their difficulties, or that people often get offended by them or think they are being fake when they are not camouflaging. Some even stated that camouflaging caused a delay in getting a formal diagnosis. They believe this would have been helpful when they were younger, potentially decreasing being hurt, by themselves or by others. The benefits the participants reported were that camouflaging helped them survive in society. They reported how there weren't many resources for them so camouflaging kept them out of bad places, alleviated bullying, or lessened the threat of being attacked. Some said it allowed them to better access the outside world, get jobs, meet people, make friends, and help with their partners and children. Others reported that they feel like it made them build resilience. They believe they built this resilience as a result of overcoming obstacles in society. When it came to the participants who do not camouflage, there were many different reasons for why they do not. Some reported stopping after they got their clinical diagnosis to preserve their mental health and also to educate others about Autism. Some believed that they were not that good at it and decided it was not worth it while others thought it only benefited the people around them, not themselves. Others reported only doing it around people who they do not know or do not understand, love, or feel supported by. It was also discussed that stopping the action of camouflaging was difficult, but some stated that it was rewarding as they reported feeling more positive, accepted, and confident. In our lab discussion, we brought up that not having to camouflage would be helpful for many people. We mentioned how camouflaging is different from code switching, which is usually only for a short period of time, at a specific event, and does not have the same risks as camouflaging. In general, it was our opinion that there were more negatives than positives to camouflaging. People generally have a lack of understanding about autism. A lack of awareness can cause camouflaging to happen for a long time, leading to the potential risks listed above. As a lab, we will continue working to reduce the need for camouflaging by fostering greater understanding and inclusivity for our participants with autism. Reference: Bradley, L., Shaw, R., Baron-Cohen, S., Cassidy, S. (2021, December 7). Autistic Adults’ Experiences of Camouflaging and Its Perceived Impact on Mental Health. Autism in Adulthood. Retrieved from https://www.liebertpub.com/doi/full/10.1089/aut.2020.0071 |