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The discussion touched upon the sensitive nature of autism research and the NIH’s approach, particularly considering concerns that framing autism as an “epidemic” might alienate autistic individuals who view their neurotype not as a disease. The interviewee, when asked about engaging with thes critics, highlighted the extensive portfolio of autism research funded by the NIH, comprising approximately 700 distinct studies. They emphasized the broad scope of this research, including the establishment of the Autism Data Science Initiative, which specifically targets the etiology of autism spectrum disorder.
The interviewee expressed a nuanced outlook on the terminology, stating that labeling the entire spectrum as a “disorder” is inaccurate for many. They stressed the scientific importance of understanding the biological underpinnings of the conditions that define the autism spectrum.Drawing from personal experience with a severely disabled autistic relative, the interviewee noted the significant biological differences that can exist between individuals on different parts of the spectrum, contrasting this with those who are simply neurodiverse.A key aspiration articulated was for the NIH’s research to encompass and address the needs of all individuals on the autism spectrum. The interviewee pointed out that the support required by high-functioning autistic individuals differs considerably from that needed by those with more profound disabilities. Furthermore, they acknowledged the presence of co-occurring conditions with biological origins in certain segments of the spectrum. the overarching goal, as described in designing the NIH’s autism research portfolio, is to provide better answers and solutions for everyone affected.
The conversation then shifted to the topic of climate change and the NIH’s role in related research, specifically concerning respiratory and mental health impacts. Critics argue that the NIH should expand its involvement in this area, while the NIH maintains that such research falls under the purview of other organizations. The interviewee sought to differentiate between two distinct aspects of climate change.
The first aspect, they explained, concerns the fundamental question of whether climate change causes shifts in weather patterns, the link between carbon dioxide emissions and climatic alterations, and the resulting disruption of ecosystems. The second aspect, and the one the NIH is well-equipped to address, is how severe climatic events impact human health. The interviewee affirmed their full support for the NIH’s existing portfolio dedicated to understanding how environmental exposures affect human health.This includes research into the impact of air pollution on asthma and the health consequences of severe flooding on local populations. As an example, they cited a recent award for a project investigating the health effects of the ecological disaster in East Palestine, Ohio, on nearby residents. However, the interviewee reiterated that the initial aspect, concerning the mechanisms of climate change driven by CO2 emissions, is considered outside the NIH’s core mission.
