Frequently Asked Questions About FASD
Fetal Alcohol Spectrum Disorders (FASD) describes a range of permanent birth defects caused by maternal consumption of alcohol during pregnancy. To learn about FASD and its impact on those affected, their, families and communities, and about current research, start with these commonly-asked questions.
Fetal Alcohol Spectrum Disorders, known by the initials FASD, is an umbrella term describing a range of disabilities that affect a child who was exposed to alcohol while in the womb. Different medical names are given to distinguish diagnostic findings in this group of disorders.
FASD is caused when an unborn child (fetus) is exposed to alcohol while in the womb (uterus).
FASD is not itself a medical diagnosis.
Other terms, such as Fetal Alcohol Syndrome (FAS), are used to provide medical diagnoses. They include, but are not limited to, the following medical diagnoses:
- Fetal Alcohol Syndrome (FAS)
- Partial Fetal Alcohol Syndrome (pFAS)
- Alcohol-Related Neurodevelopmental Disorder (ARND)
- Alcohol-Related Birth Defects (ARBD)
- Fetal Alcohol Effect (FAE)
It’s estimated that 5% of all births in the United States and other industrialized countries are affected by FASDs.
This statistic may be more meaningful by thinking of it as one in every twenty persons in the United States is affected by FASD.
In 2018, this prevalence is three times greater than is the estimated prevalence of autism in the U.S.
In some countries, the number is calculated to be much higher.
There are no hereditary genetic mutations that cause FASD, unlike those known to cause other developmental conditions, such as Down syndrome, muscular dystrophy, Tay-Sachs Disease, etc.
To increase our understanding of how FASDs affects individuals exposed to alcohol during prenatal development, scientists are studying the effect of alcohol on DNA (molecules in cells that carry genetic material).
Specifically, they are researching the epigenetic effects of alcohol on development.
What Is Epigenetics?
The human genome encompasses the complete set of genetic material (DNA) that determines the development of the individual and all its traits and characteristics. Changes (mutations) in the DNA, that may include removing or adding extra chromosomes, can lead to the development of various genetically transmitted conditions.
The epigenome refers to chemical modifications that occur within a genome without changing sequence of genes in the DNA.
Epigenetic alterations include the methylation of DNA, and the chemical modification of the proteins around which the DNA is wrapped to form the chromosomes. Together, these mechanisms remodel the structure of the protein–DNA complex (called the chromatin) and regulate gene expression.
Epigenetics describes how the environment in which the person develops influences how the epigenetically altered genetic code of the person is expressed in their health and behavior. Scientists are looking at the epigenetic effects of alcohol both on the prenatal environment and on the environment to which the individual is exposed during their lifetime.
For example, when sexually active men drink, the DNA in their sperm is affected by the properties in alcohol that chemically damage cells. The affected DNA is passed along to the embryo created when the man’s sperm fertilizes the woman’s egg. Scientists have found that these changes can affect the health and behavior of the child after birth.
In addition, every egg that each woman carries is developed in her ovaries before she is born. Therefore, if a female baby is exposed to alcohol during her mother’s pregnancy, the alcohol can affect the DNA carrying genetic information in the baby’s egg cells. Scientists believe that the affected DNA in her eggs can influence the epigenetics of each of the children she gives birth to, regardless of whether she herself drinks alcohol during pregnancy.
The epigenetic effects of prenatal alcohol on DNA can be subtle. More than likely, multiple genes play a part in an individual’s behavior (their temperament, energy level, etc.). Also, in most cases, more than a single environmental characteristic would be required to increase the probability that epigenetic expression linked to prenatal alcohol exposure will affect the person.
In some circumstances, if the person avoids certain environmental factors known to affect development (nutrition, stress, smoking or drinking in childhood and adolescence, etc.), the genetic changes to their DNA from alcohol may have no visible or measurable impact. In contrast, if the person’s prenatal, childhood, or teenage environment does include these triggering characteristics, their growth, health, or behavior may be affected as a result of how their genes are expressed.
Apart from epigenetics, FASD tends to be generational.
So, if a child has FASD, chances are that the child’s birth mother may have some form of it, too, because the maternal grandmother drank during pregnancy. (It is known that genetics play a role in the likelihood of some people to become alcoholics. In addition, some forms of psychiatric illness, including depression, bipolar disorder, and schizophrenia are known to have a genetic component. Some people who inherit these tendencies may drink alcohol in an attempt to manage their feelings, to sleep better, etc.) The child’s biological siblings (with the same birth mother) often have FASD as well, unless the mother doesn’t drink during a pregnancy.
No. Only prenatal (before birth) alcohol exposure while in the womb results in babies born with an FASD.
However, when the father drinks alcohol, it can affect the genetic instructions in his sperm that are passed to his children. These effects may increase the severity of FASD in a child whose mother drank during pregnancy.
No. But growth, general health, and post-birth brain health can all be damaged if the mother drinks alcohol and breastfeeds her child.
When a woman drinks alcohol during pregnancy, the baby’s alcohol levels reach that of the mother’s within minutes, through the umbilical cord.
A baby is so small that the alcohol’s effects are much more damaging than they are to the woman.
A great deal of damage can be done before the woman even knows she is pregnant.
During the first month of a developing baby’s life, cells organize to become the baby’s internal organs—including the brain and spinal cord.
Alcohol interferes with the baby’s ability to mobilize, differentiate, grow and replicate cells in the right place at the right time —especially cells in the brain and the central nervous system. Both continue to develop throughout the pregnancy.
Because this process is blocked or changed by the way alcohol affects cells, these problems occur:
- Parts of the brain will be smaller than normal or even partially absent.
- Nerve connections between brain cells don’t form properly.
- Damaged brain cells, and nerve cells and fibers in the spinal cord transmit information poorly or they “misfire,” like an electrical wire with frayed insulation.
All of this adds up to damage that impacts every aspect of the child’s life — throughout their life.
Every person with FASD is unique and behaves differently. Global problems throughout life (due to impaired or interrupted neurological development) include: sensory integration and self-regulation problems, and problems with abstract thinking, decision making and executive functioning (planning, organizing, goal-setting).
Many people with FASD have a normal IQ. Some have a low IQ. Some have an above-normal IQ. However, all of them are brain damaged, and all need to learn how to use their own intelligence.
The brain damage caused by FASD is permanent. However, an affected child displays different characteristics and has different challenges at each stage of growth. The child’s emotional maturity lags behind his or her chronological age. This gap widens as the child grows because further emotional and psychosocial development is arrested due to their unique pattern of neurological impairment.
Simply put, don’t drink alcohol while pregnant. Avoid all forms of alcoholic beverages.
The brain damage caused by prenatal alcohol exposure is permanent, and cannot be cured.
However, much can be done to compensate for the damage through education, training, a calm, structured and nurturing environment, and medical treatment.
People affected by FASD are everywhere, and the range of severity is broad among those affected. While many persons affected by FASD experience lifelong challenges and require external supports for their own safety and well-being, many more have friends and relationships, raise children of their own, work, play, and live fairly independent lives.
Medications don’t treat FASDs directly.
Rather, medications are used to treat the symptoms of impairment or other problems associated with FASD.
Click here for more information about treatments.
Usually, a team including a physician, social workers, occupational and physical therapists, and psychologists work together to diagnose FASDs.
Often, a geneticist is part of the diagnostic process, in order to rule out genetic conditions that cause similar signs or symptoms. Some metabolic disorders (such as a thyroid imbalance), seizure disorders, toxin exposures, some mental health problems, and unrelated neurological problems, such as ADHD, may look like FASD. That’s why it’s important to avoid self-diagnosing a child and to see a developmental pediatrician or FASD specialist in order to obtain a definitive diagnosis.
When a parent is looking for a diagnosis of a child suspected of having an FASD, they should bring as much information as possible to the doctor or clinic. This helps with the diagnosis. This includes:
- History of the birth mother’s alcohol use, if possible
- Any medical history available on the birth mother
- Photos of the birth mother and father, if available
- Medical records of your child’s physical exams, including documentation of your child’s physical growth and development
- Medical records or personal notes of health problems such as hearing or vision problems, muscle weakness or seizures
- Medical records or personal notes about potential central nervous system problems; for example, odd logic, inability to concentrate or stay on task, developmental delays, and other things you’ve observed
- Results of neuropsychological tests or other assessments
- School records that document academic progress and problems; also IEPs (Individualized Education Plans), if appropriate
- Photos of your child (ideally from birth through present)
Click here for a more detailed, printable checklist.
Studies show that the best outcomes for children with FASD happen when they receive appropriate intervention at the earliest age.