Children and adults with fetal alcohol spectrum disorders struggle with lifelong learning and behavioral problems. Without appropriate support, they are at high risk for secondary conditions, such as mental health problems, trouble with the law, school disruption, and substance abuse.
Christie Petrenko, assistant professor at the University of Rochester Medical Center and a research psychologist at the Mt. Hope Family Center, discusses what she calls the “largest preventable cause of developmental disabilities in the United States.”
What is fetal alcohol spectrum disorders (FASD), and how is it different from fetal alcohol syndrome (FAS)? How common is it?
The term fetal alcohol spectrum disorders represents the range of effects associated with prenatal exposure to alcohol. Fetal alcohol syndrome is just one of the diagnoses under this umbrella term.
It is currently estimated that FASD affect 2 to 5 percent of the population, which is equal to or greater than other developmental disabilities such as autism. Most people don’t realize just how prevalent FASD is.
What are the most common symptoms of FASD?
Only a small percentage of affected individuals have the set of facial features—which includes small eye openings, thin upper lip, and flat philtrum (groove under nose)—and growth delays that are most associated with prenatal alcohol exposure. Both can diminish with age.
The symptoms that have the most significant impact are those that can’t be seen—those that relate to the central nervous system. The face forms very early during pregnancy, often before many women realize they are pregnant, but the brain forms and develops throughout the entire pregnancy and is at risk any time from conception to delivery.
But there are multitudes of factors that contribute to individual outcomes: genetics, nutrition, pattern and amount of alcohol exposure, and other stressors. Therefore, children and adults with FASD can have varying degrees of neurological and behavior issues.
There are several areas that seem to be most significantly impacted across individuals. These include executive functioning, which includes impulse control and task planning, information processing, social skills, emotion regulation, and adaptive skills. As a result, individuals with FASD are at high risk for secondary conditions, such as mental health problems, school disruptions, trouble with the law, and substance use problems, especially as they enter adolescence and adulthood.
How is it diagnosed?
FASD can be diagnosed from birth through adulthood. Diagnosis in infants and toddlers relies on physical measurements or evidence of neurological damage such as microcephaly, abnormal brain imaging findings, or seizures.
Most individuals with FASD are diagnosed during preschool or school age, when neurological issues become more apparent. Adult diagnosis, though, can be particularly difficult, given that obtaining a history of prenatal alcohol exposure grows increasingly difficult over time.
Unfortunately, there are very few clinics or knowledgeable providers in the US, resulting in many individuals going undiagnosed or misdiagnosed.
How is it treated?
Currently, there is no “gold-standard” treatment for FASD, and in most regions of the country, FASD is not recognized within most systems of care as a qualifying diagnosis for services such as special education, developmental disabilities, and mental health care.
Over the last decade, an increasing number of research studies have documented the value of interventions for children with FASD and their families, including helping child with self-regulation and cognitive control, academic skills, social and adaptive functioning, behavior problems, and parent training and family support.
What can treatment offer?
Optimally, if children are diagnosed early and are provided with a nurturing home environment and appropriate services, many of the secondary conditions associated with FASD—mental health problems, school issues, trouble with the law, and substance use— can be prevented.
Treatment typically focuses on teaching affected individuals new skills while also adapting their environment to help them. Families may also need training to adapt their parenting strategies based on the neurodevelopmental strengths and weaknesses of their child. The ultimate goal is to teach the affected individual to build on areas of strength and interest, develop their own accommodations to support areas of weakness, and to seek out help when needed.
It is important to recognize that individuals with FASD vary widely in their functioning. Some individuals are able to live independently, attain full-time employment, and raise a family. Many, though, require at least some supports through adulthood, and others require a very high level of supports, including residential placements and services.
What are the biggest misconceptions?
There are so many misconceptions—especially about drinking alcohol during pregnancy and FASD. Despite the efforts at consistent messaging about the risks of drinking during pregnancy by federal agencies and organizations, most people—even professionals—have limited knowledge about FASD.
There is a general awareness that drinking during pregnancy can be harmful, but many have a limited appreciation for the scope of the problem. Some of the most common misconceptions include:
- FASD doesn’t affect my community. FASD affect all communities where women consume alcohol. The CDC estimate over 3 million women are at risk for an alcohol-exposed pregnancy.
- Women who drink alcohol during pregnancy are to blame. There are many reasons women drink during pregnancy, but intentionally hurting their baby is not one of them. Most women who drink during pregnancy do not know they are pregnant, have been given incorrect information about the risks of drinking during pregnancy, or can’t stop due to addiction. The best approach to dealing with this is to increase knowledge about the risks of drinking during pregnancy and to provide supportive treatment to women
- It’s OK to drink alcohol in later trimesters. Alcohol consumption at any point during pregnancy can interfere with brain development and can result in an FASD. All forms of alcohol can have detrimental effects.
- Individuals with FASD have intellectual disabilities. Only about 25 percent of individuals with FASD have an intellectual disability—an IQ less than 70. Many people with FASD have average or above intellectual abilities, but still struggle with executive skills, social communication, self-regulation, and adaptive skills.
- The behavior problems displayed by children with FASD are related to poor parenting. Families are often judged and blamed for their children’s behavior, which is often inappropriate for their chronological age. Often the child’s behavior is related to their disability rather than willful disobedience. Unfortunately, the standard approaches to parenting are often not a good fit for children with FASD due to the nature of their neurodevelopmental disabilities.
The most effective approaches to parenting for children with FASD, Petrenko says, emphasize positive behavior support with an emphasis on changing the environment to better meet the person’s needs in order to prevent the behavior.
Source: University of Rochester