The Pattern Is the Problem: Why Prenatal Alcohol Exposure Keeps Getting Missed | Embracing Neurodiversity
A Response to the MAHA Strategy

The Pattern Is the Problem

Prenatal alcohol exposure (PAE) has been described in the medical literature, warned about by Surgeons General, and studied for over fifty years. It has also been left out of nearly every major federal health policy vehicle built to act on exactly this kind of preventable harm — including the one being written right now. This isn't a knowledge gap. It's a pattern of omission, and it's still happening.

Fifty Years of Near-Misses

PAE Keeps Getting Named — and Keeps Getting Left Out

Every major U.S. health milestone of the last half-century had a moment where prenatal alcohol exposure could have been built into the system permanently. Almost every time, it was acknowledged in a sentence and then excluded from the funding, the surveillance, or the diagnostic code that would have made the acknowledgment matter.

1973Named

Fetal Alcohol Syndrome first described in the medical literature

Researchers Jones and Smith formally characterize the pattern of birth defects caused by prenatal alcohol exposure, giving the condition its first clinical name.

1981Advisory, not infrastructure

First Surgeon General Advisory on alcohol and pregnancy

Pregnant women are advised to limit alcohol. The warning reaches doctors and the public — but no surveillance system, funding stream, or diagnostic code follows it.

1996Named

Institute of Medicine formalizes FASD diagnostic categories

The IOM splits FASD into five clinical diagnoses, giving clinicians a shared vocabulary — but no billable code and no national tracking system to go with it.

2000Missed

CDC builds a national surveillance network — for autism, not FASD

The Autism and Developmental Disabilities Monitoring (ADDM) Network is established. A comparable tracking system for PAE/FASD still does not exist today.

2013Missed

DSM-5 declines to give FASD a standalone diagnosis

Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE) is listed only as a "condition for further study" — not a diagnosable, billable, insurance-recognized code.

2018Missed

The opioid crisis gets a coordinated federal response — PAE doesn't

The SUPPORT Act authorizes roughly $9 billion for opioid use disorder, which affects about 1.8% of Americans. PAE, affecting more than eight times as many pregnancies, receives no comparable package.

2020Partial

Healthy People 2030 sets a goal, not a system

The federal framework includes an objective to reduce drinking during pregnancy — but no coordinated diagnostic infrastructure, provider training mandate, or dedicated funding stream is attached to it.

2025Missed, again

The MAHA Report names alcohol as a children's health priority — four times

The Make Our Children Healthy Again strategy calls for education on alcohol's impact on children. Prenatal alcohol exposure and FASD are not mentioned once, despite being alcohol's most severe and lifelong harm to children.

2026Present day

Exposure is rising while the response stays flat

CDC data shows 15.2% of pregnant women reported recent alcohol use in 2021–2024, up from 13.5% in 2018–2020. The trend line is moving in the wrong direction, and the policy has not moved at all.

Being named once by a Surgeon General is not the same as being addressed by a national health system. Awareness without infrastructure isn't a strategy — it's a pattern. And patterns don't break on their own.
The Scale No One Is Naming

This Isn't a Small Gap in a Big Report

The numbers aren't hiding in obscure studies. They're sitting inside data the federal government already collects — just never connected to a name, a code, or a coordinated response.

15.2% of pregnant women reported recent alcohol use in 2021–2024 — more than 1 in 7 (CDC, MMWR 2026)
Up to 5% of U.S. school-age children may have an FASD — comparable to or higher than autism's 3.2% prevalence (CDC; May et al., 2021)
~10% of people with FASD show the facial features clinicians are trained to look for — the other 90% are invisible on sight (APA Monitor, 2022)
$0 dedicated federal funding stream — compared to roughly $1.5B/year for opioid response grants (SAMHSA, FY2024–25)
428
documented comorbidities — medical, neurological, and behavioral — linked to prenatal alcohol exposure in the peer-reviewed literature, spanning nearly every organ system and diagnostic category. One preventable root cause. Hundreds of downstream diagnoses that rarely get traced back to it.
See All 428 Comorbidities
Root Causes

Why PAE Keeps Falling Through the Cracks

This isn't a mystery. There are specific, fixable reasons PAE keeps being named in passing and never built into policy.

It's invisible

Roughly 90% of people with an FASD show no distinguishing facial features, so the condition hides inside ADHD, anxiety, or "behavior problem" diagnoses instead of being recognized at the source.

It has no diagnostic code

Without a standalone, billable DSM-5 diagnosis, there's no clean way for insurers, hospitals, or federal agencies to count cases — so the data that would justify funding never gets generated in the first place.

It has no surveillance system

Autism, opioid use, and most chronic diseases in the MAHA Report have a dedicated federal tracking network. PAE/FASD does not, so policymakers are working from estimates instead of numbers.

Stigma keeps the truth quiet

Because PAE sits close to a mother's personal history, families and even clinicians often avoid naming it directly — which starves the exact system that needs disclosure to function.

The Hidden Barrier

Addressing Stigma Without Losing the Truth

One of the greatest barriers to addressing prenatal alcohol exposure isn't a lack of need. It's silence — and much of that silence is driven by stigma.

When PAE is treated primarily as a source of blame, families become afraid to name it. Birth mothers may fear being reduced to one painful chapter of their lives. Birth families may carry grief, trauma, or unanswered questions. Adoptive and foster families often struggle with how to talk about known or suspected exposure history in a way that protects both a child's future and a family's dignity.

"A child's diagnosis should not depend on whether an adult feels safe enough to tell the whole story."

Shame doesn't prevent harm. It prevents disclosure.

Silence has never protected a child. It delays diagnosis, confuses treatment, and leaves parents, clinicians, and teachers working without the full picture. Condemnation drives families underground; compassion brings children into care.

Truth without condemnation

Honesty about PAE is not the same as condemnation. The science is clear: alcohol exposure during pregnancy can alter brain development and create lifelong needs. That truth matters, and a credible national strategy shouldn't soften it. But truth without compassion becomes just another barrier to care.

We can acknowledge that PAE is preventable and still respond to affected families with mercy.

We can promote alcohol-free pregnancy and still support women whose pregnancy stories involved trauma, addiction, coercion, poverty, or a lack of information and support.

We can honor birth families, equip adoptive and foster families, and center the needs of the child — without turning advocacy into blame.

Disclosure is not blame. Disclosure is care.

When exposure history is known, naming it isn't an accusation against a birth parent — it's an act of protection for the child. Accurate history changes how clinicians screen, how teachers respond, how parents interpret behavior, and how systems provide support. A known history should open doors, not brand a family.

From stigma to support

A grace-shaped public health response doesn't deny harm. It tells the truth about harm while refusing to abandon the people connected to it. That's the posture national policy needs now: clear science, compassionate language, practical support, and hope for every child and family affected by PAE and FASD. Naming PAE/FASD in the MAHA strategy isn't about blaming families — it's about helping children be seen accurately, supported early, and given the chance to thrive.

What We're Asking For

Recognition, Not Reinvention

Fixing this pattern doesn't require new infrastructure. It requires plugging PAE/FASD into systems that already exist — the same way opioid use disorder and autism were plugged in before it.

01

Formally name PAE and FASD in the MAHA Report and the Make Our Children Healthy Again strategy as recognized drivers of mental health and chronic disease outcomes.

02

Expand the Surgeon General's alcohol-awareness initiative to explicitly include prenatal alcohol exposure prevention — not just general youth alcohol harms.

03

Establish a dedicated federal funding stream for PAE prevention, FASD diagnosis, and family support, proportionate to prevalence — the way SOR/TOR grants exist for opioid use disorder.

04

Require validated alcohol-screening tools in routine prenatal and pediatric care, consistent with existing ACOG recommendations.

05

Fund FASD-informed training for educators, pediatric providers, and justice professionals so brain-based differences stop being mistaken for defiance.

06

Support standardized diagnostic and billing infrastructure so the true cost of PAE — and the savings from preventing it — can finally be tracked.

Sources

  • Jones KL, Smith DW. "Recognition of the fetal alcohol syndrome in early infancy." Lancet. 1973.
  • U.S. Surgeon General's Advisory on Alcohol Use in Pregnancy, 1981 (updated 2005).
  • Institute of Medicine. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. 1996.
  • American Psychiatric Association. DSM-5, Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE), 2013.
  • SAMHSA/HHS, State Opioid Response (SOR) and Tribal Opioid Response (TOR) grant appropriations, FY2024–FY2025; SUPPORT Act, 2018.
  • Healthy People 2030, Office of Disease Prevention and Health Promotion, health.gov.
  • CDC/Thomas SA, et al. "Alcohol Consumption During Pregnancy Among Women Aged 18–49 Years — United States, 2021–2024." MMWR 2026;75(22).
  • CDC ADDM Network. "Prevalence and Early Identification of Autism Spectrum Disorder Among Children Aged 4 and 8 Years." MMWR, 2025.
  • May PA, et al. Drug Alcohol Depend, 2021; APA Monitor, "A hidden epidemic of fetal alcohol syndrome," 2022.
  • Popova S, et al. "Comorbidity of fetal alcohol spectrum disorder: a systematic review and meta-analysis." Lancet. 2016;387(10022):978-987.
  • The White House. MAHA Report / Make Our Children Healthy Again Strategy, 2025.
  • CanFASD, "Common Messages: Guidelines for Talking and Writing About FASD," 2023; FASD United, "Language and Stigma Guide," 2024.
Prepared by Embracing Neurodiversity, LLC — part of the response to the Make Our Children Healthy Again (MAHA) strategy.