Terminology

Fetal Alcohol Syndrome (FAS) – FAS is a medical diagnosis for a specific pattern of characteristics resulting from the effects of prenatal alcohol exposure. These characteristics include growth retardation, or being small for age, microcephaly (smaller than normal head), short palpebral fissures (small eye slits), smooth philtrum (vertical groove between the upper lip and nose), a thin upper lip, central nervous system (brain and spinal cord) damage causing behavioral and cognitive (thinking, learning) problems. Evidence of prenatal alcohol exposure is sought but is not necessary for diagnosis to be made.

Fetal Alcohol Effect (FAE) – When a person has central nervous system damage like FAS indicated by behavioral and cognitive problems but without the distinctive facial features, the person may have FAE. Though the term appears in earlier studies and continues to be used by laypersons, some researchers in FAS have requested that the term FAE no longer be used due to the belief by some that FAE is less severe than FAS. THIS IS NOT TRUE. In fact, it may just mean that the child merely doesn’t have the facial features or the growth retardation, but the damage to the brain may be just as extensive. Because of the confusion surrounding this term, the following term is now being used more widely.

Alcohol-Related Neurodevelopmental Disorder (ARND) is diagnosed when a child meets the criteria for brain damage but does not have all of the facial features or growth retardation of FAS. Again, ARND IS NOT A LESS SEVERE FORM OF FAS. In many cases, the brain damage in a patient with ARND is as extensive as that in a patient with FAS.

Alcohol-Related Birth Defects (ARBD) are physical abnormalities associated with prenatal alcohol exposure. They include: abnormalities of the eyes and the ability to see and process visual information; the ears and the ability to hear and process auditory information; the structure of the heart and the associated cardiac systems; and abnormalities in the limbs.

Fetal Alcohol Spectrum Disorder (FASD) describes a spectrum or range of clinical conditions associated with prenatal alcohol exposure. 1) FAS with full distinctive facial features; 2) Partial Fetal Alcohol Syndrome (PFAS) with some of the distinctive facial features; 3) ARND with little or no distinctive facial features.

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Primary Disabilities:

Possible facial features associated with FAS/ARND include:

• Short palpebral fissures (small eye slits)
• Short upturned nose
• Low nasal bridge
• Flat philtrum (vertical groove between the upper lip and nose)
• Thin upper lip
• Flat midface
• Small chin
• Simply formed, low set ears

• Eye and ear defects
• Respiratory (lung) problems
• Heart murmur
• Limb reduction
• Low birth weight
• Hutchinson’s teeth

• Developmental delays – often acts younger than his or her age
• Inconsistent performance – seems to “get it” one day and lose it the next. Leads people to believe that the child is intentionally being difficult.
• Hyperactivity – constantly in motion
• Impulsivity – says and does whatever comes to mind without thinking about consequences
• Attention deficits, distractibility – at times their lack of ability to stay focused on a task for very long is due to attention deficits; may also be easily distracted
• Disorganization – messy, can’t find things, unprepared for school or work
• Poor social skills – has problems making and keeping friends, doesn’t understand social cues or body language
• Literal thinking – doesn’t understand subtle jokes or statements that have double meanings; take things very literally. For example, don’t say, “Hit the road” when you mean “Leave” or “Cut it out” when you mean “Stop”.
• Difficulty with abstractions – struggles with abstract concepts such as math, money management, time, ownership, and consequences.
• Difficulty with transitions – needs help when switching from one activity to another. May become very involved in current activity and will have difficulty changing to a new one especially if it is felt that the current activity is incomplete.
• Memory problems – difficulty storing and retrieving information
• Processing deficits – may think more slowly, may only understand every third word of normally paced conversation.
• Ability to repeat instructions, but inability to put them into action – can “talk the talk but not walk the walk”
• Inability to predict outcomes or understand consequences and cause/effect – poor judgment
• Difficulty generalizing from one situation to another – a lesson learned in one situation does not carry over to a new situation.

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Secondary Disabilities

Secondary disabilities are those that result from the primary disabilities. For example, due to damage to certain brain regions, a person with FAS/ARND may have poor judgment. This could lead to the secondary disability of getting into trouble with the law. Ann Streissguth, Ph.D. of the University of Washington, a pioneer and recognized authority in the field of FAS, completed a study in 1996 identifying these secondary disabilities. They include:

• Trouble with the law – secondary to poor judgment, inability to understand consequences, and boundary issues
• Mental health problems – secondary to damage to brain regions and chemical imbalances
• Disrupted school experience – secondary to developmental delays, inconsistent performance, hyperactivity, impulsivity, distractibility, attention deficits, disorganization, poor social skills, difficulty with abstractions, memory problems, processing deficits, difficulty with transitions
• Confinement – secondary to poor judgment and boundary issues
• Alcohol and drug problems – possibly self medicating to compensate for damage to brain regions and chemical imbalances
• Problems with employment – secondary to developmental delays, poor social skills, difficulty with abstractions like time, etc.
• Dependent living – secondary to difficulty with abstractions like time, money management, poor social skills, developmental delays
• Inappropriate sexual behavior – secondary to boundary issues, poor social skills, inability to understand consequences

With early and ongoing support and services, children with FAS/ARND are less likely to develop these secondary disabilities.

Dr. Streissguth, in the same study, identified factors that decreased incidence or reduced the effect of the secondary disabilities. These factors include:

• Living in a stable and nurturant home for over 72% of life
• Being diagnosed before the age of 6
• Never having experienced violence against oneself
• Staying in each living situation for an average of more than 2.8 years.
• Experiencing a good quality home from ages 8-12 years
• Applied for and eligible for services for the developmentally disabled
• Having a diagnosis of FAS rather than ARND
• Having basic needs met for at least 13% of life

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Quick Facts

• Prenatal exposure to alcohol and other drugs is the leading cause of preventable birth defects in the country.
• Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications.
• The term FASD is not intended for use as a clinical diagnosis. It refers to conditions such as fetal alcohol syndrome (FAS), fetal alcohol effects (FAE), alcohol-related neurodevelopmental disorder (ARND), and alcohol-related birth defects (ARBD).
• Each year, as many as 40,000 babies are born with an FASD, costing the nation about $4 billion. (Source: FASD Center for Excellence)
• A person with FASD may need multiple services involving numerous agencies in various service systems spread across a number of locations. It is rare to find coordination of services or case management for persons with FASD. Depending on the individual’s specific needs, several dozen providers may be involved.
• Although the various effects of FASD are permanent conditions, specific symptoms may be treatable or manageable. People with FASD can grow, improve and function in life with proper support.
• FASD is a 100 percent preventable birth defect. All women of child-bearing age need to know not a single drop!

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