The Autism Science Foundation’s (ASF) Day of Learning, held in New York City on March 30th, 2023, was a profound display of scientific innovation and collaboration within the autism research community. Each speaker provided valuable insights that massively contribute to our endless and essential endeavor towards better comprehending autism spectrum disorder (ASD).
Each presentation and discussion centered around groundbreaking advancements like the potential of ketamine trials for ASD and new ways to examine existing diagnostic frameworks. From psychiatrists to Ph.D. students, ASF’s Day of Learning demonstrated collective strives towards a more inclusive world for those with ASD (and their families).
What Have We Learned from the Past 10 Years of Research?
Dr. Kelsey Martin of The Simons Foundation/SFARI describes the past decade of autism research as groundbreaking. From the beginning, the mission of autism research has been to enhance our understanding of ASD by funding the up-most quality and relevant research. Over the last ten years, autism research has done that, producing great studies that have helped many clinicians, providers, advocates, and neurodivergent individuals achieve better outcomes.
Since 2016, SFARI and NF Neuroscience have tremendously advanced our understanding of the spectrum and currently hold an annual budget of over 110 million dollars. While there is still much to ascertain, the past ten years of research have set a foundation and given us many reasons to feel hopeful for what’s next.
Where Should Research Focus in the Next 10 Years?
Dr. James McPartland of Yale University recently presented an interesting position regarding where autism research should focus over the next ten years. With a thoughtful and optimistic outlook, his discussion explored deepening our understanding of the human mind and behavior by presenting where we should NOT focus instead.
McPartland proposed the community stop trying to understand or study autism and instead consider what it means to HAVE autism. It’s essential to consider ASD from the perspective of the child affected, the parent, and neuroscientists. Additionally, he proposed a focus on measuring our insights correctly.
In many cases, the label autism informs clinicians and educators of what to expect from the individual they may be working with. While the label offers meaning, in other ways, it fails the autism community. We can rectify these failures through science by deriving meaningful inferences from our current understanding of ASD.
By highlighting the importance of focusing on critical areas such as social drive, specific brain responses, and better diagnostic mechanisms, McPartland believes we can more fully accommodate neurodiversity.
Rethinking Autism’s Diagnostic Framework
Dr. Evdokia Anagnostou of the University of Toronto suggested that to understand better and diagnose autism, we may need to rethink our current diagnostic approach. She proposed we examine when focusing on ASD is helpful and when it is not. Dr. Anagnostou suggests clinicians regularly see kids and teenagers with ASD. Interestingly, many seldom enter care due to differences in social communication or behaviors, which is how the framework defines autism.
Most commonly, patients come to a clinician for help with other issues usually related to mental health. These disturbances may include aggression, ADHD, mood instability, anxiety, self-injury, obsessive tendencies, or motor deficits, to name a few.
Dr. Evdokia points out that children have a range of experiences as they age. Some neurodivergent individuals become lawyers, while others live with more challenging circumstances. Unfortunately, under the current diagnostic framework, clinicians find cases of different conditions more alike than two autism cases.
By advancing our understanding of autism biology, neuroscience, and gene variants, we can more deeply understand the likelihood of autism to establish more personalized treatments. Dr. Anagnostou’s presentation at the Day of Learning may lead to a new path of research and biological findings.
Next Steps for the Autism Ketamine Trials
Dr. Ana Kostic of The Seaver Autism Center at Mount Sinai recently presented research regarding autism ketamine trials. Ketamine, a simple yet older anesthetic, is being repurposed to aid individuals living with complex symptoms. According to research, Ketamine may improve various aspects of life on the spectrum.
Of course, using Ketamine should not be taken lightly, so it’s essential to continue understanding the relationship between Ketamine and ASD. Dr. Kostic’s presentation highlighted the successful results of early trials and her plans to expand the research to include larger population samples. At the ASF’s Day of Learning, it was clear that the neurodivergent community is eager to learn more about Ketamine’s potential for ASD!
Understanding the Needs of Autism Siblings as They Grow Up
Nicole Rosen, a Ph.D. candidate at UCLA, presented on understanding the needs of autism siblings as they grow up. She highlighted that having a sibling with autism presents unique challenges for the child with ASD and their siblings. There is no unaffected sibling in an ASD family. Worst of all, ASD science and research leave neurotypical siblings out of reporting, making these relationships harder to comprehend.
This inability to recognize the value in sibling relationships within the context of ASD is unfortunate as siblings play considerable roles in supporting each other, typically across lifespans. Acknowledging sibling relationships is significant to autism research and our comprehension of ASD’s impact. By understanding sibling needs and how their roles change, we can create support systems that benefit children with ASD and their families.
With thoughtful insight, Rosen demonstrated the need to raise the voices of autism siblings within the community. A particular highlight of Rosen’s speech was her optimism when describing siblings of neurodivergent individuals as eager to participate in future research and further our understanding of ASD!
Addressing the Challenges of Anxiety in Autism
Dr. Connor Kerns of the University of British Columbia presented the challenges of anxiety in autism. She emphasized that anxiety is a common issue for people with autism that can significantly impact their lives but that not every individual with ASD will have an anxiety disorder.
Her presentation described the personalized experiences of families with anxiety disorders and ASD. Many ASD families navigate what some consider “atypical” or distinct concerns, like stress around ordinary objects or experiences like walking past a dog, watching a sunset, or turning on a blender. These activities can massively exacerbate psychological distress in ASD.
Dr. Kerns also discussed the various interventions to manage anxiety, such as cognitive-behavioral therapy (CBT) adapted for autism. Additionally, she discusses avenues that may help us better define and assess anxiety in ASD to measure the size of the population more accurately. Further, she proposed we work to differentiate behaviors related to anxiety from those of ASD.
Inside the Numbers: Highlighting CDC’s New Autism Findings
Dr. Kelly Shaw, from the Centers for Disease Control, shared valuable insights regarding tracking profound autism. Her presentation highlighted the importance of monitoring this specific form of ASD, emphasizing its impact on the CDC’s findings. The information shared was compelling and eye-opening, bringing a deeper understanding of the importance of tracking.
According to current data, 26.7% of neurodivergent children have profound autism. While this population is prominent, this is the first time the statistic uses CDC data. Kids with profound ASD, compared to those with non-profound ASD, were more likely to be female and from racial and ethnic minority groups.
These individuals were also typically from lower socioeconomic backgrounds, often born with low birth weight early. It was clear from Dr. Shaw’s presentation that profound autism deserves more attention.
My Perspective as an Autistic Scientist Conducting Autism Research
Zachary Williams, an MD/Ph.D. candidate at Vanderbilt University, provided an insightful perspective on his experience as a scientist with autism conducting ASD research. His presentation highlighted how he uses his knowledge and experience having ASD to inform his research, which ultimately helps advance our understanding. By hearing from individuals like Zacharv, who have first-hand accounts, we can continue progressing in our knowledge to offer better support.
Although science sometimes discourages studying ourselves or others “like us,” Zachary’s lived experience has helped him produce better research and participate in unique ways.
Final Thoughts on the ASF’s Day of Learning 2023
ASF’s Day of Learning 2023 offered the autism community valuable insight into the needs and challenges that autism science is working to address and was a genuine testament to the tireless efforts of some of the top talents in autism research and science. The presenters left every audience member inspired and optimistic about the future of neurodiversity and analysis.
By learning more about these topics, we can create better systems and interventions to help manage symptoms associated with autism and provide more significant support for families dealing with this disorder.
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