Fetal Alcohol Spectrum Disorders

Fetal alcohol spectrum disorders (FASDs) are a range of conditions caused by exposure to alcohol during pregnancy or breastfeeding. FASDs is not itself a clinical diagnosis; it is a descriptive term that encompasses the following group of diagnoses:

• Fetal alcohol syndrome (FAS).
• Partial FAS (pFAS).
• Neurobehavioral disorder, alcohol exposed (ND/AE).
• Static encephalopathy, alcohol exposed (SE/AE).
• Alcohol-related neurodevelopmental disorder (ARND).
• Alcohol-related birth defects (ARBD).

• FASDs occur all over the world, wherever pregnant women drink alcohol. They can occur in any group or community.
• Maternal drinking during pregnancy is the only cause of FASDs.
• A woman does not need to have an alcohol-use problem or disorder to have a child with an FASD. It is possible for a child to have an FASD because the mother consumed alcohol when she did not know she was pregnant.
• Drinking alcohol at any time during pregnancy has the potential to cause damage to the developing baby. There is no known safe amount of alcohol to drink during pregnancy.
• Only about 10% of people affected by prenatal alcohol exposure have physical signs of that exposure. Damage to the brain may be present without the facial characteristics of FAS.
• Individuals with FASDs may have some challenging behaviors. These are not the result of poor parenting. These behaviors are more likely to be the individual’s way of expressing feelings, which can include being frustrated because they do not understand expectations or instructions.
• FASDs are lifelong disorders. In other words, a person lives with these conditions from birth all the way through old age.
• FASDs affect everyone differently. When FASD signs are recognized early and the right supports are provided, individuals with an FASD can lead successful lives.

There are many success stories of individuals with FASDs living healthy and happy lives and many useful strategies to help them.

Alcohol refers to the intoxicating part of beer, wine, spirits (whisky, gin, tequila, vodka, etc.) and home brew. Alcohol can also be found in some mouth washes, hand sanitizer, and some household cleaners, such as Lysol. Alcohol exposure can be prenatal (the period of time before birth, during which the baby is growing and developing in the mother’s womb), postnatal (after birth), or both. The impacts of alcohol exposure on developing fetuses and babies vary due to genetics, which are traits passed down from parents to their children through their genes, and environment, or traits developed through experience.

The signs of FASDs can be internal, external, or both. For example:

• Developmental malformations refers to problems with the development of parts of the body while the baby is in the womb. These can include:
  • Holes in the heart.
  • Cleft lip or cleft palate, where there is a gap in the lip or the roof of the mouth.
  • Unseen changes, such as changes to the structures that make up the brain.
  • Problems with the skeletal system (bones and joints).
  • Problems with the development of the kidneys, liver, or other internal organs.
• Executive functioning refers to how the brain uses and connects memories and previously learned information to the present. FASDs can limit the ability to plan, to organize oneself, to be able to pay attention, to remember details, to manage one’s time and space, and to reflect on oneself and one’s work. Often, people with FASDs have a much easier time with concrete things than abstract ones due to difficulty with executive functioning.
  • Abstract refers to something that exists as a thought or an idea, but it does not have a material or physical existence. Some examples are beauty, friendship, truth, kindness, love, and time.
  • Concrete refers to something that has a physical existence or form. They are things that can be touched, smelled, seen, heard, or tasted.
• Facial features refers to the smooth philtrum, small palpebral fissures, and thin upper lip seen together in individuals with fetal alcohol syndrome. Not all individuals with an FASD have these facial features, but individuals must have them in order to receive a diagnosis of FAS.
• Palpebral fissure refers to the opening between the eyelids. In individuals with FAS, this fissure is much smaller than it is in a neurotypical person.
• Philtrum refers to the parallel groove that runs between the bottom of the nose and the top lip. In individuals with FAS, the groove is indistinct to non-existent.
• Thin upper lip refers to the very small upper lip that occurs in individuals with FAS.
• Sensory processing refers to how the brain takes in and makes sense of sight, touch, taste, smell, hearing, and movement. FASDs can interfere with sensory processing.

Remember that people with FASDs can have both primary and secondary disabilities. Primary disabilities are challenges that are directly related to the damage done by alcohol exposure during pregnancy. Secondary disabilities are challenges that a person is not born with, but instead develop from a lack of recognition or support for the primary disabilities.

You can help to lower the risks of children being born with FASDs by discouraging women from using alcohol if they are:

• Pregnant.
• Planning to be pregnant.
• Sexually active and would consider keeping an unexpected pregnancy.

FASDs can be prevented if women do not consume alcohol while pregnant. However, not all women know about the dangers of alcohol exposure to their developing baby. This is why it is important to talk to all women about their alcohol use. If a woman has good, accurate information about the dangers of alcohol use during pregnancy, she will be better able to make an informed choice.

There is no safe amount of alcohol to consume during pregnancy.

• Alcohol is a teratogen, or a substance that can change or disrupt the typical development of an unborn child’s central nervous system, the internal organs, and the muscular-skeletal system.
• The more alcohol a woman consumes and the more often she consumes alcohol, the more likely that a pregnancy will be affected.
• Any amount of alcohol is a risk for women who are pregnant or may become pregnant.

There is no safe type of alcohol to consume during pregnancy.

• All types of alcohol can affect the typical development of a baby in the womb.
• Anything that a pregnant mother consumes that contains alcohol can put a developing baby at risk.

There is no safe time to consume alcohol during pregnancy.

• The central nervous system (brain and spinal cord) develops continuously all the way through the pregnancy. Exposure to alcohol at any time can cause problems with the central nervous system.

Prenatal alcohol exposure has been shown to affect the development of all parts of the developing baby’s central nervous system. It disrupts:

• Creation of brain cells (neurogenesis).
• Movement of brain cells (migration).
• Connection of brain cells to one another (synapse creation).
• Communication between brain cells.
• Death of brain cells (apoptosis).
• Ability of the brain to adapt and respond to experiences (plasticity).

The effects of alcohol on the developing baby are determined by the interaction between several factors:

• How much alcohol is consumed.
• The stage of pregnancy in which the alcohol was consumed.
• How frequently alcohol was consumed during pregnancy.
• The genes of the mother.
• The genes of the baby.
• The postnatal environment (e.g., adequate nutrition; consistent, stable, and nurturing caregivers; or exposure to physical, emotional, or psychological trauma).

Alcohol also has an effect on:

• Infants' sleep-wake patterns.
• Children's gross motor development.
• Children's early sensory-based learning.
• Some mothers’ ability to produce enough milk.

The areas of thebrainthat seem to be most affected by prenatal exposure to alcohol include:

• The cerebellum, which plays a role in motor coordination. "Motor coordination" refers to how different parts of the body move together to complete a task (e.g., running or throwing), behavior, and memory.
• The basal ganglia, which is involved in movement, the perception of time, and spatial memory. This also refers to the type of memory needed to store and process information to do a complex task, such as solving a puzzle, doing math problems, or finding the way around a town.
• The corpus callosum, which allows the two halves of the brain to communicate with each other.
• The hippocampus, which plays an important role in storing and retrieving memories.

FASDs are whole-brain disorders. Alcohol exposure in the womb can affect the development of the individual parts of the brain as well as how that brain works as a whole. Individuals with FASDs often struggle with:

• Memory.
• Learning.
• Speech and language.
• Social skills.
• Processing sensory information.
• Executive functioning.

If there is alcohol exposure early during the pregnancy, the way that the person’s face develops may be affected. If this is the case, then the person will have a set of facial features:

• A smooth philtrum (the groove between the bottom of the nose and the upper lip).
• A thin upper lip.
• Smaller eye openings (palpebral fissures).

They may also be shorter and weigh less than others of the same age.

These things--the facial features, their height and weight, and how their brain works (functions)--will determine whether they will be diagnosed with fetal alcohol syndrome or another type of FASD.

Screening toolrefers a set of questions that health professionals can ask to find out about a health concern, such as a person’s alcohol drinking habits. Screening tools often prompt brief interventions, or short, supportive, and non-judgmental conversations with a client or patient about the person's alcohol use. This is often educational and it is tailored to the person's specific circumstances. It can also find opportunities for early diagnosis and intervention.

Getting an early diagnosis means that an affected individual will have access to the services and supports necessary for a healthy and successful life.

The first step in diagnosis is screening. Triggers for screening for an FASD and referral to a diagnostic team can include:

• Known alcohol exposure during pregnancy.
• Concern on the part of the care provider that the person may have an FASD.
• Presence of some of the associated facial features, growth deficiencies, developmental delays, or functional deficits (central nervous system dysfunction).

Screening means looking for signs that an individual may be affected by prenatal alcohol exposure.

• These signs may appear in a person’s facial features, their behavior, or their struggles at home or school.
• Screening also considers whether the mother indicates that she consumed alcohol while she was pregnant.
• If this screening indicates that there was prenatal alcohol exposure and that this is causing, or could cause, long-term challenges, the person should be referred for a full assessment and diagnosis.

In Alaska, most diagnoses are done through a multidisciplinary diagnostic team. This team includes a coordinator, a medical provider, a navigator (someone to guide the family or individual through the process of diagnosis), an occupational or physical therapist, a psychologist, and a speech and language specialist.

The diagnostic team uses the Four-Digit Diagnostic Code FASD diagnostic system developed by the FAS Diagnostic and Prevention Network at the University of Washington in Seattle. The University of Washington was the first place in the United States to describe and diagnose FAS in 1973. Since then, the team at the FAS Diagnostic and Prevention Network has been working on the system to make sure that it is accurate.

All of the members of the team use assessment tools to evaluate how people with FASDs think, learn, remember, behave, move, talk, and interact with other people. Assessments also include looking for the facial features of FAS, measuring the height and weight of the person with the FASD, and compiling information about the person’s medical history and specific challenges.

After reviewing the information the diagnostic team gathers, the team uses the Four-Digit Diagnostic Code system to make a diagnosis.

• A diagnosis includes information about four elements: height and weight, facial features, functioning of the central nervous system, and whether there was alcohol exposure during pregnancy.
• Each element of the diagnosis is given a score between 1 and 4.
• A score of 1 generally means that there are no problems.
• A score of 4 generally means that there are significant issues.
• Someone with a diagnosis of FAS may have a score of 4444.
• Someone without any alcohol exposure and no problems may have a score of 1111.
• There are 256 possible scores. Each score has been matched to a diagnosis.

At the end of the process, the team writes a report and discusses it with the person and family. The report outlines the challenges the person faces, the things the person does well, and recommendations for assistance and/or treatment.

The multidisciplinary team diagnostic process for FASDs can be a long and difficult; however, interventions and treatment can begin prior to diagnoses for FASDs.

When clients' primary disabilities are not recognized or understood, they are at risk for developing secondary disabilities. These can include:

• Mental health issues ( depression, anxiety, or others).
• Disruptions to education.
• Trouble with the law.
• Being admitted to an inpatient treatment center or correctional facility.
• Alcohol and drug issues.

Not all individuals with an FASD will experience all of these secondary disabilities. Their experience of any of these challenges will depend on their primary disabilities and the types and duration of their environmental supports, resources, and deficits at home, in school, and in their community.

Generally, individuals who have received a diagnosis of FAS will experience fewer secondary disabilities than those without that particular diagnosis.

• This is likely because people with FAS have an outward physical sign (facial features) that they have been exposed to alcohol during pregnancy. Individuals with an FASD other than FAS do not have those facial features, and their exposure is usually only seen in their behavior.
• People with an outward physical sign of a disability are more likely to receive extra support, including earlier identification and interventions.

Secondary disabilities also occur more frequently in individuals who have a higher IQ (above 79). They are often not deemed eligible for special education services in school. This makes it more difficult for these individuals to be identified, screened, assessed, and diagnosed.

There are no generalized treatment or intervention plans for individuals with FASDs, and no medications have been developed specifically for people with FASDs. Instead, intervention and treatment plans for people with FASDs should be tailored to each individual. They are best developed after an assessment of the individual’s strengths and challenges.

Remember that people with FASDs are usually concrete thinkers and struggle with abstract language. They may behave or respond to abstract statements as though they understand what is being said when they do not, or they may become frustrated or shut down if they cannot understand you. Therefore, when working with an individual with an FASD, it is best to:

• Use concrete language when giving instructions, providing advice, or offering assistance.
• Keep instructions simple and brief. Complicated instructions can be too much for an individual with an FASD to think through or remember.
• Do not use idioms (e.g., it's raining cats and dogs), metaphors (figures of speech), or sarcasm, which can easily be misinterpreted.

When working with a woman who has an FASD and may also use alcohol during pregnancy, be frank and open with her.

• Do not simply hint that she shouldn’t drink alcohol or say, “Don’t drink if you’re pregnant.” Someone with an FASD may not make the connection that "drink" means alcohol.
• Be explicit and concrete. Say things like, “It’s not good for you or the baby to drink any type of alcohol when you are pregnant. Alcohol includes beer, wine, spirits (list examples she will recognize like whisky, gin, tequila, and vodka) and home brew.”

Individuals with an FASD function best when they are in a routine.

• A routine that does not change from day to day helps them know what to expect; this may decrease frustration and anxiety.
• You can help by scheduling appointments or activities for the same time each week.
• Talk with caregivers about creating a stable, consistent routine at home and school.

Understand that many individuals with an FASD struggle with memory and executive functioning.

• This means they may struggle to understand cause and effect, to be able to plan ahead or foresee the potential consequences of their actions.
• They may not easily learn from their mistakes.
• They may struggle with self-reflection or the ability to think about thinking (the ability to be aware of what they are thinking or how they are thinking about things).

When working with a client and caregiver to support an individual with an FASD:

• Use concrete language.
• Be specific.
• Avoid abstract concepts or words.
• Keep instructions short, and go step-by-step.
• Allow more time for a person with an FASD to answer a question or to ask a question.
• Reteach skills in every situation in which they will be used. Do not assume that they will be remembered or transferred from one situation to another.
• Teach skills using positive language and specifics of the environment when possible. For example:
  • "Walk slowly in the hallway" is better than "Don't run."
  • "Quiet voices in the library" is better than "No yelling."
  • "Use gentle hands when you touch your sister" is better than "Stop pushing."
• Provide assistance and supports for persons with memory problems. Have a routine and be consistent. For example, if there is a weekly appointment, schedule that appointment at the same day and time each week.
• Adjust expectations based on the person's stage of development and not chronological age (see Chapter C-1: Development Across the Lifespan ).

All individuals with an FASD have strengths and talents. Like all people, they do better when they hear about what they do well and they are provided encouragement and support for their talents and abilities. Some strengths and talents your clients with FASDs may have include:

• Generosity.
• Willing and helpful attitude.
• Determination.
• Persistence.
• Hardworking.
• Friendliness, outgoing, affectionate, caring.
• Good with younger children.
• Athletic.
• Artistic.
• Musical.
• Experiential learning.

When working with individuals with FASDs, always ask caregivers these questions to help identify and encourage their strengths and talents:

• What do they do well?
• What do they like to do?
• What are their best qualities? Are they friendly? Caring? Helpful? Generous?
• What are your most enjoyable experiences with them?

Answers to these questions can help determine activities and tasks that can boost self-confidence and the feeling that they are an important part of the community.

• Encourage them to do the things they do well.
• Encourage them to schedule time for the things they like to do.
• Make sure that their good qualities and actions are praised and highlighted.
• Use their skills, abilities, and talents when supporting them in areas where they struggle.

Instead of sitting and talking about experiences with you, people with FASDs may benefit from doing activities, such as:

• Traditional activities such as berry-picking, fishing, or dancing.
• Arts and crafts or playing games.
• Community participation through things like gathering wood for elders.

Acting in ethical ways is an important part of being a health care provider. There are many ethical issues related to FASDs, including those related to the rights and health of the pregnant woman and the developing fetus.

Six basic principles are commonly used to describe the ethical challenges in health care settings:

1. Autonomy: individuals' right to make their own decisions about their health and their bodies and the ability to make that choice voluntarily.
2. Beneficence: seeking the benefit of the patient.
3. Nonmalficence: the responsibility to avoid causing harm.
4. Justice: considering the fair distribution of social benefits and burdens and to promote and follow laws and practices in ways that are fair for all.
5. Respect: asking health care providers to honor a person’s dignity and interests.
6. Confidentiality: the protection of privacy, consistent with ethical, legal, and policy restrictions.

Many people have strong feelings about alcohol, alcohol use, and alcohol and pregnancy. These feelings can influence how we feel about women who may use alcohol during their pregnancy. Regardless of their feelings, providers must operate with the assumption that no woman sets out to harm her developing fetus.

Some women need professional help to stop drinking.

• This help can come from counseling settings, outpatient substance abuse treatment, or inpatient substance abuse treatment. For more on these options, see Chapter B-4: BHA/P Services and Common Interventions .
• This can be a challenge if the woman thinks that she will get into trouble if she admits that she might need help.
• It is important that all women feel safe and that they can ask for help.
• The first step to getting help for people who struggle with substance use is to talk with them about that use, and then to refer them for the appropriate treatment.

When policies are punitive (designed to punish) women who admit to consuming alcohol or other drugs during pregnancy, they may discourage women from seeking important medical care for themselves and their babies. Therefore, many medical and other associations support a non-punitive approach, one where the woman is not punished for seeking care. Such organizations include:

• American College of Obstetricians and Gynecologists (ACOG)
• American Academy of Pediatrics
• American Medical Association
• American Nurses Association
• American Public Health Association
• National Council on Alcoholism and Drug Dependence
• March of Dimes

These organizations agree that:

• Women have the right to informed consent and bodily integrity. This means that they have the right to seek medical care and advice, and to refuse that care and advice (an informed refusal). Women should not be punished for an informed refusal.
• Court-ordered interventions or punishments to control a woman's behaviors related to pregnancy ignore the fact that there are limits to medical knowledge and predictions.
• Women deserve and are entitled to informed treatment.
• Punitive and coercive policies are likely to discourage prenatal care and treatment, putting women and their babies at risk. They also undermine the care provider-patient relationship, which is built on trust.
• Punitive and coercive policies often unjustly single out the most vulnerable women--those unable to afford childcare or to fight court judgments, for example.
• Punitive and coercive policies may make legal behavior illegal only for women who are pregnant or may become pregnant.

Instead, these organizations and others recommend a public health approach. This emphasizes education, access to treatment, and public awareness of the dangers of alcohol use during pregnancy.

The following organizations and networks offer a lot of information and resources for individuals with FASDs, their caregivers, and providers.

• State of Alaska Office of FASD
• Centers for Disease Control & Prevention, National Center on Birth Defects and Developmental Disabilities
• SAMHSA FASD Center for Excellence
• SAMHSA FASD Center for Excellence – Native Communities Resources
• The Circle of Hope: A Mentoring Network for Birth Mothers
• FAS Diagnostic and Prevention Network
• National Organization on Fetal Alcohol Syndrome (NOFAS)
• TIP 58: Addressing Fetal Alcohol Spectrum Disorders (FASD), available free through the SAMHSA website.

The material presented in this chapter is based on:

• FASD Regional Training Centers Curriculum Development Team (2009). Fetal alcohol spectrum disorders competency-based curriculum development guide for medical and allied health education and practice. Atlanta, GA: Centers for Disease Control and Prevention.

  2009. FASD 101: Insights into fetal alcohol spectrum disorders. Anchorage, AK: State of Alaska, Department of Health and Social Services, Division of Behavioral Health

  2010. FASD 201: Developing Successful Interventions and Supports. Anchorage, AK: State of Alaska, Department of Health and Social Services, Division of Behavioral Health.

  Astley, S. (2004) Diagnostic Guide for Fetal Alcohol Spectrum Disorders: The 4-Digit Diagnostic Code. Seattle, WA: FAS Diagnostic and Prevention Network, University of Washington. 3rd Ed.

  Trudeau, D (Ed.) (2005) Trying Differently: A guide for daily living and working with FASDs and other brain differences. Whitehorse, Yukon: Fetal Alcohol Syndrome Society Yukon (FASSY). 3rd Ed.

  FASD: Strategies Not Solutions. Edmonton, Alberta: Region 6 Edmonton and Area Child and Youth FASD Subcommittee.

  Dubovsky, D. (2010) FASD Prevention and Treatment for Substance Abuse Professionals. Rockville, MD: SAMHSA FASD Center for Excellence.