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Breaking Down the HHS Autism Announcements: What This Means for Families

Disclaimer: We are not scientists or researchers, and this article presents information collected and available at the time of writing. The science surrounding autism is constantly evolving, and we will continue to monitor developments and update this information as needed. Always consult with qualified healthcare professionals for medical advice.


The U.S. Department of Health and Human Services (HHS) recently made important announcements about autism spectrum disorder (ASD). On September 22, 2025, President Trump and HHS Secretary Robert F. Kennedy Jr. announced three major initiatives. They are focusing on what they call an "autism epidemic" that affects 1 in 31 American children. Here's what families should know about these new developments.


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The Current State of Autism in America


The numbers are staggering and demand attention. Autism prevalence in the U.S. has surged to 1 in 31 children (3.2%) born in 2014, a sharp increase from 1 in 36 just two years earlier. This represents a nearly 400% increase since 2000, when the rate was 1 in 250 children. Boys are disproportionately affected at 1 in 20, and some regions like California show even higher rates at 1 in 12.5 children.


For families already navigating an autism diagnosis, these statistics validate what many have observed: autism is becoming increasingly common, and the need for answers, treatments, and support has never been more urgent.


Three Game-Changing Announcements


1. Leucovorin: A New Hope for Treatment


The biggest news is about leucovorin (also called folinic acid), which might help treat some autism symptoms. This isn't a treatment that works for everyone with autism - it only helps a specific group of people. But it's important because it's the first treatment for autism symptoms that the FDA has officially recognized.


What is Cerebral Folate Deficiency (CFD)?


CFD happens when the brain can't get enough folate (a B-vitamin), even if the rest of the body has normal folate levels. This can cause serious brain-related problems like autism behaviors, slower development, and seizures.


How Leucovorin Helps


Leucovorin works by bypassing the broken folate delivery system and delivering folate directly to the brain. The results look promising: a review of 23 studies found that 85% of patients showed improvements, including better speech and communication skills.


What This Means for Families:

  • If your child has autism symptoms along with other brain-related problems, ask your doctor about testing for CFD

  • This treatment only helps children with autism who have been diagnosed with CFD

  • Don't use store-bought folate supplements on your own - they could be dangerous

  • The FDA is updating medicine labels to include this new use


2. Acetaminophen During Pregnancy: New Guidance for Expectant Mothers


The second big announcement is about Tylenol (acetaminophen) use during pregnancy. New research suggests it might be linked to autism and ADHD in children.


The Research Landscape


Big studies like the Nurses' Health Study II and the Boston Birth Cohort show links between taking acetaminophen during pregnancy and children later being diagnosed with autism (ASD) or ADHD. However, research is still ongoing; some studies from Scandinavian countries that compared siblings didn't find strong connections.


Practical Guidance for Pregnant Women:

  • Tylenol (acetaminophen) is currently the only over-the-counter pain reliever that doctors consider safe for fever during pregnancy

  • Try to use Tylenol only when needed - use the smallest amount that works for the shortest time possible

  • Talk to your doctor before using Tylenol for a long time

  • If you have a fever while pregnant, don't ignore it. Treating a fever is crucial because an untreated fever during pregnancy can pose risks to both the mother and the baby.


For Current Parents: If you took Tylenol during pregnancy, don't worry. The studies only show possible links to autism, not direct causes. Many different things can contribute to autism. What's most important now is focusing on getting your child the help and support they need.


Sources:


3. Autism Data Science Initiative: Investing in the Future


The third announcement is about $50 million going to autism research through the NIH Autism Data Science Initiative (ADSI). This isn't just more of the same research - it's better, smarter research that looks at the whole picture.


What Makes This Different:


The ADSI collects a wide range of information in one place. This includes genetic data, clinical records, behavior observations, and information about which services people use. The initiative examines how environmental factors (such as chemicals, food, or medications) interact with a person's genes to influence autism risk and development.


Areas of Focus Include:

  • Harmful chemicals in the places where children live and where pregnant women spend time

  • Food choices and what mothers eat during pregnancy

  • Medicines and health problems during pregnancy or early childhood

  • Life stress and how the body responds to it


What This Means for Families:

  • A better understanding of what causes autism and what makes it more likely

  • Treatments and help are designed for each person's specific needs

  • Better help and support for families

  • Studies that also focus on adults with autism, not just children


Looking Beyond the Headlines: Important Considerations


The Controversy Factor


Not everyone agrees with these announcements. Some autism advocates and researchers don't like calling autism an "epidemic" because it can make families feel blamed or ashamed. We need to find better treatments while also respecting the autism community. It's important to remember that autism is a different way of thinking and experiencing the world, not something to fear.


What Families Should Do Now


Immediate Actions:

  1. Don’t make drastic changes based on these announcements alone

  2. Discuss CFD testing with your child’s healthcare provider if they show relevant symptoms

  3. Continue the evidence-based treatments your child is currently receiving

  4. Stay informed about research developments while maintaining healthy skepticism


For Expectant Parents:

  1. Follow current medical guidance about acetaminophen use

  2. Discuss concerns with your healthcare provider

  3. Don’t avoid necessary treatment for fever or pain during pregnancy


Advocacy and Support:

  1. Connect with autism organizations in your community

  2. Stay engaged with policy developments that affect autism services and support

  3. Support research initiatives that prioritize community input and ethical approaches


The Road Ahead


These new HHS announcements are good news and a starting point for a better understanding and support of autism. The leucovorin treatment gives immediate help to some families, while the research projects will teach us more in the future.


If your family is dealing with autism now, remember that these new developments add to - but don't replace - early intervention, education support, therapies, and focusing on your child's strengths. The autism community is strong, speaks up for itself, and remains hopeful - qualities that will continue to drive progress, regardless of what future research reveals.


While we await further updates from these initiatives, the best thing families can do is continue to support their children, utilize available services, and stay connected with other autism families and support groups. Our understanding of autism and its treatment is continually evolving, and these announcements suggest that progress is being made at a faster pace.


Meanwhile, you can check out the video from the Daily Moth interview with Dr Zach Featherstone below.



This blog post is based on the HHS announcements made on September 22, 2025. Always talk to your doctor before making any medical decisions. Check official sources for the newest information about autism research and treatments.

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