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From NIH Review to the Frontlines of COVID: Why Science and Compassion Must Conquer Misinformation

<5 minute read

Copyright © 2018-2025 Dr David P Ruttenberg. All rights reserved.


Patient with mask.

Two weeks ago, COVID-19 put me flat on the couch. Between bouts of fever I kept replaying a scene from earlier this year: scrolling through an unpublished NIH funding announcement for the Autism Data Science Initiative (ADSI)—before NIH had officially released it. The document, labeled OTA-25-006, outlined a $50 million pot, a lightning-fast 30-day application window, and a review process run largely inside NIH. The leak left many of us reviewers asking the same question: Who got this first, and why?


When added to HHS Secretary Robert F. Kennedy Jr.’s public promise to “find autism’s causes by September,” the optics could not be worse.

The ADSI Leak: Transparency Undermined

Multiple outlets confirmed that key ADSI materials surfaced weeks early:


  • The Transmitter broke the story on 4 June 2025, noting no peer-review panels were named and that NIH could revoke funding mid-project (The Transmitter, 2025).


  • STAT News followed on 11 June, highlighting the accelerated timeline and warning that political pressure could skew conclusions (STAT News, 2025).


  • Autism Spectrum News published the full draft ROA the same day, revealing NIH-staff-led reviews and raising alarms about independence (Autism Spectrum News, 2025).


  • Fierce Healthcare had earlier obtained internal slides on 6 May, months before the ROA posted, detailing a plan to merge Medicare, Medicaid, pharmacy, wearable, and environmental data—sparking privacy objections (Fierce Healthcare, 2025).


  • Behavioral Health Business confirmed on 15 June that the contracting mechanism bypassed standard grant safeguards (Behavioral Health Business, 2025).


These premature disclosures, widely dubbed a leak, gave select insiders a head start and fueled skepticism about the initiative’s integrity. When added to HHS Secretary Robert F. Kennedy Jr.’s public promise to “find autism’s causes by September,” the optics could not be worse.


Shambles Inside the Review Room

By the time our scientific panel convened, trust was already frayed. Traditional peer-review safeguards—public rosters, months-long prep—had been replaced by a sprint and a skeleton crew. Many proposals leaned heavily on the same “vaccines cause autism” canard already debunked by decades of research (Taylor et al., 2014). Reviewing them felt less like science and more like crisis management.


Worse were multiple reports/emails I received from the NIH/ADSI executives regarding my submitted reviews that were misplaced by their staff not once, not twice, but three times.


Eventually, the science officers "located them".

Or did they?


We may never know if my comprehensive and unbiased scientific review was ever found.


COVID, Costs, and a Grim Winter Forecast

While ADSI dominated headlines, federal support for COVID-19 therapeutics quietly dried up. Paxlovid’s price ballooned to $1,500 per course, leaving anyone without the stamina to navigate a burdensome assistance process effectively locked out (U.S. Department of Health and Human Services [HHS], 2024). Meanwhile, vaccination campaigns stagnated under partisan attacks. CDC colleagues warn that if a more virulent variant hits this winter, we will be scrambling yet again.


Double Jeopardy for Neurodivergent Families

For autistic and otherwise neurodivergent families, the harm is twofold:


  • Stigma Reloaded. Each recycled myth about “vaccine injury” reignites social blame (Pellicano & Stears, 2020).


  • Silence Where Support Belongs. Millions diverted to hunt phantom causes means fewer dollars for AAC devices, respite care, and inclusive education.


Charting a Better Course

  • Answer disinformation with louder truth. Share the peer-reviewed evidence: vaccines do not cause autism (Taylor et al., 2014). Use stories plus statistics—people remember both.


  • Replace fear with lived experience. Autistic voices belong at every table, from NIH study sections to school boards.


  • Stand relentless for science and compassion. Correct, respectfully but firmly, every time misinformation surfaces.


  • Demand policy accountability. Contact legislators: lifesaving COVID therapeutics must be affordable; federally funded research must follow transparent, peer-review protocols.


If we stay quiet, neurodivergent communities pay twice—once in stigma, again in silence. I won’t let that happen, and I invite you to stand with me.


Join the Misinformation Conversation

Was the ADSI “leak” a canary in the coal mine or business as usual? Share your thoughts below, and let’s build a future where evidence and empathy triumph over politics.



References

Autism Spectrum News. (2025, June 11). Coalition of autism scientists sound alarm on NIH’s new $50 M research initiative.
Behavioral Health Business. (2025, June 15). NIH’s $50 M for new autism research draws concerns from advocacy group.
Fierce Healthcare. (2025, May 6). HHS launches autism project using Medicare, Medicaid data.
HHS. (2024). COVID-19 treatments: Access and affordability overview. https://www.hhs.gov/coronavirus/covid-19-treatments
Pellicano, E., & Stears, M. (2020). The autism public health crisis and stigma. Nature Reviews Psychology.
STAT News. (2025, June 11). NIH autism research initiative met with skepticism from researchers.
Taylor, L. E., Swerdfeger, A. L., & Eslick, G. D. (2014). Vaccines are not associated with autism: An evidence-based meta-analysis of case-control and cohort studies. Vaccine, 32(29), 3623–3629.
The Transmitter. (2025, June 4). NIH autism database announcement raises concerns among researchers.

About the Author:

Dr David Ruttenberg PhD, FRSA, FIoHE, AFHEA is a neuroscientist, autism advocate, and Fulbright Specialist Awardee dedicated to advancing ethical artificial intelligence, neurodiversity accommodation, and transparent science communication. With a background spanning music production to cutting-edge wearable technology, Dr Ruttenberg combines science and compassion to empower individuals and communities to thrive. Inspired daily by their brilliant autistic daughter and family, Dr Ruttenberg strives to break barriers and foster a more inclusive, understanding world.

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