FASD United shares the concerns raised by leading autism organizations and maternal health organizations regarding new Federal health agency guidance on autism and prenatal substance exposure. These new materials and guidance are a cause for concern within the FASD community. FASD often co-occurs with autism, and prenatal alcohol exposure (PAE) often co-occurs with other substance exposures.
We’d like to offer some important points to keep in mind as our community processes this news:
Support and treatment are the best ways to address substance exposure in pregnancy.
As Federal health agencies work to address the important issues related to prenatal substance exposure, it is crucial to approach these efforts through the lens of support and treatment. Expanding access to treatment services and evidence-based interventions is a proven and effective way to reduce the costs associated with prenatal substance exposure. We strongly caution against the use of any punitive or coercive action in this area, which have been proven to be ineffective and increase harmful stigma.
Individuals with FASD and PAE should be included and supported in work that addresses prenatal substance exposure.
As Federal health agencies address the various forms of substance exposure during pregnancy, we should not lose sight of the fact that FASD is highly prevalent, affecting 1 in 20 children, and most people living with FASD are undiagnosed or misdiagnosed. While there are other substances that are known to be harmful during pregnancy in addition to alcohol, we should take great care to not diminish the significance and importance of FASD. With the FASD community in need of much greater recognition and support, it is crucial to keep our focus and attention on individuals with FASD. It is important that this focused work occurs through a strengths-based lens that provides access to supports and services that are effective, non-stigmatizing, and FASD-informed.
Scientific accuracy is critical when linking a particular substance exposure to a developmental disability.
When it comes to public health, trust is crucial and evidence and scientific integrity matter. To be effective, public health guidance should be backed up by the scientific community, experts in the field, and the individuals who are personally affected by their work. We share the concerns raised by leading national organizations and experts related to the scientific accuracy of a reported link between acetaminophen (commonly sold under the brand name Tylenol) and autism.
According to the American College of Obstetricians and Gynecologists (ACOG), “researchers have studied the use of acetaminophen during pregnancy for more than two decades. None of the research conducted during that time has shown that there is any risk associated with appropriate use of acetaminophen in pregnancy. The FDA and the Society for Maternal-Fetal Medicine did their own reviews in 2015 and 2017 respectively and came to the same conclusion.”
Information and guidance on developmental disability and substance exposure requires an evidence-based, research-based, systemic approach. This process takes time and cannot be rushed.
Federal public health agency information, data, and resources on FASD have been tremendously valuable over the years to the FASD field and the FASD community. Statistics on the high prevalence of FASD are often utilized by families to educate systems of care and the public about FASD and the need for services and support.
We are concerned that issues related to the accuracy of Federal health guidance risk eroding the public’s trust and faith in the accuracy of public health data and guidance at large, including in the area of FASD and prenatal alcohol exposure. We echo leading autism organizations’ call to “uphold scientific integrity [and] disseminate accurate public health information.”
Our language should be respectful and empowering.
The language we use matters. Our Language and Stigma Guide reflects our commitment to see each person treated with respect and be empowered. We are concerned with language that refers to autism as “preventable” or an “epidemic”, which leading autism groups say, “perpetuate stigma against autistic people.”
All too frequently, the “attention-grabbing” language that has been used to address prenatal substance exposure has been found to be ineffective and harmful. For example, using “all-or-nothing” language like “100% preventable” can grab attention, but this comes at the expense of accuracy and can perpetuate stigma. Proscriptive language like “do not use any acetaminophen during pregnancy ” may sound strong and assertive, yet it often provokes a negative backlash. It is recommended to use language that avoids perpetuating stigma while being accurate and non-judgmental. The most meaningful tools we can offer families is not shame or blame, but accurate information and access to meaningful supports.
People with autism, FASD, and other disabilities have great strengths and gifts.
As autism groups point out, “Autism is complex and multifactorial, presenting differently from person to person.” The same can be said for people with FASD. It is important to take a respectful and empowering strengths-based approach when we talk about individuals with FASD, autism, or any other disability. Our language should uplift, never demean.
We are inspired by the words of Dr. Yasmin Senturias, a leading expert in FASD, who writes that, “Children and adults with autism are not broken. Each has unique strengths, perspectives, and gifts. Their lives hold beauty and potential, and their contributions enrich families, schools, workplaces, and communities.” The same is certainly true for individuals with FASD.
The FASD and autism communities are stronger together.
A strong and healthy FASD community is linked together with a thriving and united autism community. For more on this subject, please refer to our statement “A Message of Support and Solidarity for the Autism Community” from April 2025.