Fetal Alcohol Spectrum Disorders
What is FASD?
Fetal Alcohol Spectrum Disorders (FASD) are a group of conditions that can occur in a person whose mother drank alcohol during pregnancy. These effects can include physical problems and problems with behavior and learning. Often, a person with an FASD has a mix of these problems.
The term FASD is not meant for use as a clinical diagnosis, but rather to refer to the range of effects that can happen to a person whose mother drank alcohol during pregnancy. These conditions can affect each person in different ways and can range from mild to severe.
For more information: PA FETAL ALCOHOL SPECTRUM DISORDER TASK FORCE
Cause and Prevention: How Does FASD Happen?
FASD is caused by a woman drinking alcohol during pregnancy. There is no known amount of alcohol that is safe to drink while pregnant. There is also no safe time to drink during pregnancy and no safe kind of alcohol to drink while pregnant. To prevent FASD, a woman should not drink alcohol while she is pregnant, or when becoming pregnant is possible. This is because a woman can get pregnant and not know for several weeks or more (half of all pregnancies in the United States are unplanned).
For more information:
Terminology: What Are the Types of FASD?
Different terms are used to describe FASD, depending on the symptoms.
Fetal Alcohol Syndrome (FAS): Individuals with abnormal facial features (facial dysmorphology), impaired growth, and cognitive and behavioral abnormalities.
Partial Fetal Alcohol Syndrome (PFAS): Individuals with PFAS without growth deficiency, or PFAS with most but not all of the typical facial features.
Alcohol-Related Neurodevelopmental Disorder (ARND): Individuals with prenatal alcohol exposure and neurodevelopmental abnormalities, but no observable FAS facial features. (Note: Some diagnostic systems replace ARND with neurobehavioral disorder/alcohol-exposed and static encephalopathy/alcohol-exposed – see below.)
Neurobehavioral Disorder/Alcohol Exposed (ND/AE): Prenatal alcohol exposure, moderate cognitive/behavioral impairment (equivalent to moderate ARND).
Static Encephalopathy/Alcohol-Exposed (SE/AE): Individuals with prenatal alcohol exposure and severe cognitive/behavioral impairment, but no observable FAS facial features (equivalent to severe ARND).
The term fetal alcohol effects (FAE) was previously used to describe intellectual disabilities and problems with behavior and learning in a person whose mother drank alcohol during pregnancy. In 1996, the Institute of Medicine (IOM) replaced FAE with ARND and ARBD.
Prevalence: How Many Cases of FASD Are There?
The prevalence of the full spectrum of FASD in the general U.S. population is estimated at 9.1 per 1,000 live births, though in-school reviews suggest that the national rate could potentially be closer to 50 per 1,0001-2. In addition, recent retro¬spective analyses of hospital admissions data3 and studies among foster and adoptive youth4 indicate that under-reporting of alcohol misuse by women and misdiagnosis of individuals with an FASD may further disguise true prevalence.
For more information:
1 May, P. A., Gossage, J. P., Kalberg, W. O., Robinson, L. K., Buckley, D., Manning, M., & Hoyme, H. E. (2009). Prevalence and epidemiologic characteristics of FASD from various research methods with an emphasis on recent in-school studies. Developmental Disabilities Research Reviews, 15(3), 176-192.
2 May, P. A., Baete, A., Russo, J., Elliott, A. J., Blankenship, J., Kalberg, W. O., Buckley, D., Brooks, M., Hasken, J., Abdul-Rahman, O., Adam, M. P., Robinson, L. K., Manning, M., Hoyme, E. (2014). Prevalence and characteristics of Fetal Alcohol Spectrum Disorders. Pediatrics, 134(5), 854-866.
3 Morleo, M., Woolfall, K., Dedman, D., Mukherjee, R., Bellis, M. A., & Cook, P. A. (2011). Under-reporting of Foetal Alcohol Spectrum Disorders: An analysis of hospital episode statistics. BMC Pediatrics, 11, 14.
4 Chasnoff, I. J., Wells, A. M., & King, L. (2015). Misdiagnosis and missed diagnoses in foster and adoptive children with prenatal alcohol exposure.Pediatrics, 135(2), 264-270.
Financial Impact: What Does FASD Cost?
The cost factor of raising a child with an FASD is significant. Researchers have found that, for a child with identified FAS, incurred health costs were nine times higher than for children without an FASD. The lifetime cost of caring for a person with FAS is estimated to be at least $2 million, and the overall annual cost of FASD to the U.S. healthcare system to be more than $6 billion2.
For more information:
1 Amendah, D. D., Grosse, S. D., & Bertrand, J. (2010). Medical expenditures of children in the United States with Fetal Alcohol Syndrome.Neurotoxicology and Teratology, 33(2), 322-324.
2 Lupton, C., Burd, L., & Harwood, R. (2004). Cost of fetal alcohol spectrum disorders. American Journal of Medical Genetics, 127C(671), 42-50.
Other Frequently Asked Questions about FASD
Does heavier drinking during pregnancy cause more harm to the baby?
No amount of alcohol during pregnancy is guaranteed to be safe. However, it is true that women who drink heavily during pregnancy increase the risk of alcohol-related harm to their babies. For more information:
How is FASD diagnosed?
Diagnosing FASD can be difficult. If a birth mother drinks during pregnancy, being honest about her drinking will help her doctor avoid a wrong diagnosis. For the child, the earlier the diagnosis, the better the outcome. A doctor can make a diagnosis alone, but may also seek opinions from other experts. The best treatment for FASD will involve a range of healthcare professionals, such as psychologists, speech pathologists, social workers, and certain kinds of therapists. For more information:
Can FASD be cured?
No, FASD cannot be cured, but with proper diagnosis, treatment, and a support network of family and friends, many people with an FASD can learn coping skills and have an improved quality of life.
Is FASD genetic or hereditary?
There is no evidence that FASD is hereditary or genetic. In other words, FASD does not "run in the family."
Can drinking by the father cause an FASD?
Current science shows that an FASD can only happen when a pregnant woman consumes alcohol. Science does not yet show that the father’s drinking prior to conception can cause an FASD. However, there is science that shows that a father’s drinking can affect the genes of the next generation or the one after that1-3. This process is called epigenetics. The best way a father can help prevent FASD is to help the mother avoid alcohol while she is pregnant, which may require him to reconsider his own drinking habits.
1Haycock, P.C. (2009). Fetal Alcohol Spectrum Disorders: The epigenetic perspective. Biology of Reproduction, 81(4), 607-617.
2Hegedus, A. M., Tarter, R. E., Hill, S. Y., Jacob, T., & Winsten, N. E. (1984). Static Ataxia: A possible marker for alcoholism. Alcoholism: Clinical and Experimental Research, 8, 580-582.
3Tarter, R. E., Hegedus, A. M., Goldstein, G., Shelly, C., & Alterman, A. I. (1984). Adolescent sons of alcoholics: Neuropsychological and personality characteristics. Alcoholism: Clinical and Experimental Research, 8, 216-222.
Can FASD be passed along through breast milk?
Alcohol in breast milk is not linked to FASD. However, when a woman who is breastfeeding drinks alcohol, some of that alcohol does enter her breast milk. Research shows that alcohol in milk can harm a child's development, sleep, and learning. For more information:
What are the main concerns for parents and family of a child with an FASD?
Parents of children with an FASD face unique challenges. A child with an FASD may get into trouble or act out, they may need to be told things many times, and they may do things without understanding the consequences. When they get older, they may not be able to live alone. However, studies have shown that early diagnosis and a stable, positive environment can improve the outlook for people with an FASD. Several groups have developed materials to help parents and family members. For more information:
What You Need to Know: Independent Living for People With Fetal Alcohol Spectrum Disorders
The Minnesota Organization on Fetal Alcohol Syndrome: Educational Resources
Can I Catch It? (brochure for siblings)
Adoptive parents can refer to:
How many service providers does a child with an FASD need?
Children and adolescents with an FASD are often involved with multiple service providers and systems. In one example, a young child with an FASD interacted with more than 30 different service providers. Many Doors, No Master Key illustrates the numerous services needed by an actual child with FAS (named Brandan) and his family. When Brandan was a toddler, he and his family interacted with more than 30 service providers in a number of service systems (health, education, social and community, and legal and financial). The number of services increased from his toddler years to his elementary school years.
While Brandan’s case cannot be generalized to every child with an FASD, these slides do offer an accurate representation of the importance of coordinated, multi-systemic care in assisting children and families coping with an FASD. Families and caregivers are encouraged to use these slides in presentations on FASD, or as educational tools when working with providers or educators so that everyone assisting the child understands the broad range of services need to help him or her achieve success.
Many Doors, No Master Key: Resources Needed for Brandan, Age 1-2 Years
Many Doors, No Master Key: Resources Needed for Brandan, Elementary School Years
What is the Affordable Care Act (ACA) and how can it help individuals with an FASD and their families?
The ACA is a United States federal statute signed into law by President Barack Obama on March 23, 2010. Together with the Health Care and Education Reconciliation Act, this statute represents the most significant regulatory overhaul of the country's healthcare system since the passage of Medicare and Medicaid in 1965.
The goals of ACA are to increase the quality and affordability of health insurance, lower the uninsured rate by expanding public and private insurance coverage and reduce the costs of health care for individuals and the government. The ACA provides a number of mechanisms—including mandates, subsidies, and insurance exchanges—which expand coverage and affordability. The law also requires insurance companies to cover all applicants within new minimum standards and offer the same rates regardless of pre-existing conditions or gender.
Implementation of the ACA presents an exceptional opportunity to extend health insurance and additional services, including FASD prevention, to additional female populations, especially to poor and near-poor female individuals who do not currently have health insurance.
The Health Insurance Marketplace was launched on October 1, 2013, to comply with the ACA. By debuting the Health Insurance Marketplace, a major element of the ACA has been set in motion. The Health Insurance Marketplace allows you to find quality health coverage. The Marketplace can assist you if you do not have coverage or if you have it but want to consider other options. In addition, you can learn if you can lower your insurance costs based on your income by comparing coverage options side by side. Coverage for consumers began January 1, 2014.
(Department of Health and Human Services Substance Abuse and mental Health Services) www.samhsa.gov.