'They are jumping the gun': Families respond to Trump administration's autism claims

1 week ago

Parents of children pinch autism speak retired aft Trump linked Tylenol usage to autism and promoted leucovorin arsenic a imaginable treatment, raising interest and confusion.

STEVE INSKEEP, HOST:

This week, nan Trump management went beyond nan evidence, according to scientists and doctors, not conscionable successful linking Tylenol to autism, but besides insisting that different supplier mightiness dainty it. NPR's Yuki Noguchi reports connected really families are responding.

YUKI NOGUCHI, BYLINE: Caitee Donovan's daughter, Scarlett, was 17 months aged erstwhile she was diagnosed pinch autism.

CAITEE DONOVAN: We were told she would ne'er speak. A nonstop quote from nan doctor, we'd beryllium fortunate if she sat and banged her caput against nan wall. That was what we were told.

NOGUCHI: Now, 9 years later?

DONOVAN: She plays emblem football. She did cheer for 4 years. She talks nonstop.

NOGUCHI: Donovan says it wasn't immoderate drug, but years of therapies for speech, movement, behaviour and moreover eating that helped. Donovan now understands autism is analyzable pinch mostly familial origins. But for years, she agonized whether thing she did aliases didn't do might've caused nan condition.

DONOVAN: You spell done this self-blame, and you hit yourself up and you inquire yourself 1 cardinal questions. And I've been successful therapy for galore years and worked connected this a batch to travel to nan conclusion that it isn't thing I did. This is conscionable who my girl is, and she's cleanable nan measurement she is. And this is not my fault.

NOGUCHI: So she was dismayed proceeding President Trump and his deputies talk astir autism. In particular, Health and Human Services Secretary Robert F. Kennedy Jr. said this erstwhile announcing nan Food and Drug Administration greenlit broader usage of leucovorin.

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ROBERT F KENNEDY JR: Our investigation has revealed that folate deficiency successful a child's encephalon tin lead to autism. We person besides identified an breathtaking therapy that whitethorn use ample numbers of children who suffer from autism.

NOGUCHI: Scientists mobility some statements. Leucovorin is simply a chemotherapy supplier that treats folate aliases vitamin B deficiencies. Studies of its usage connected those pinch autism are very limited. Anyway, Donovan says, suggesting autism has elemental causes aliases solutions is wrong. She worries it will confuse and frighten different families.

DONOVAN: On 1 manus telling maine that a medicine caused it, and past connected nan different manus telling maine that a medicine could hole it, I deliberation I'd beryllium scared.

NOGUCHI: Alycia Halladay shares those concerns. Halladay is simply a doctor, genitor of a girl pinch autism and main technological serviceman of nan Autism Science Foundation. She says nan management is bypassing normal investigation and information checks pinch leucovorin, pinning its religion connected a mini study showing nan supplier whitethorn alleviate immoderate symptoms for a subset of autistic patients pinch cerebral folate deficiency.

ALYCIA HALLADAY: The study was very small. It didn't person immoderate information data. They are jumping nan weapon a small bit. But I don't deliberation astir group really understand nan rigor that nan FDA usually would apply.

NOGUCHI: She's besides captious of statements by Mehmet Oz, caput of nan Centers for Medicare and Medicaid Services.

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MEHMET OZ: State Medicaid programs successful business pinch CMS will screen medicine leucovorin astir nan country. It's yours, but you'll person to spell to a expert to get a prescription.

NOGUCHI: Halladay says, successful fact, nan White House is allowing leucovorin only for that subset of autistic patients pinch a vitamin B deficiency.

HALLADAY: It was disingenuous to show group astatine nan property convention that it was going to beryllium made disposable to everybody. I deliberation families should cognize that, successful fact, it's not going to beryllium approved aliases made disposable to nan wide autism community. It's only going to beryllium made disposable to those pinch a documented cerebral folate deficiency.

NOGUCHI: Nevertheless, she says galore families are excited.

HALLADAY: People person been asking their doctors for this, and their doctors person been telling them there's not capable information data, there's not capable effectiveness data.

NOGUCHI: Halladay says nan management is fundamentally testing leucovorin successful nan existent world. The management says it will cod information to spot what happens, quote, "over nan adjacent fewer months."

Yuki Noguchi, NPR News.

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