Defining a Disability:
What is Fetal Alcohol Syndrome/Effects?
Ann Waller, M.Ed.

When we come into contact with professionals or parents who are new to
the field of FAS, it is necessary to give them a concise summary of
foundational information on the disability. This article is offered for
that purpose.
Fetal Alcohol Syndrome (FAS) is a birth defect involving permanent brain
damage caused by prenatal exposure to alcohol.  There are four
diagnostic criteria for FAS: alcohol exposure; prenatal and/or postnatal
growth deficiencies; a certain pattern of facial features (although
these features are frequently outgrown before or during adolescence);
and central nervous system damage. The neurological damage is evidenced
by behavior problems which may involve learning disabilities, mental
retardation, and other mental deficits. (See related article on Arrested
Conscience Development.) FAS may also cause a myriad of physical birth
defects.
Fetal Alcohol Effects (FAE) is a term used to describe the same
disability without the facial features and/or growth deficiencies. At
this point in time, FAE is not officially recognized as a medical or
mental health diagnosis. It is not a less severe form of FAS. In fact,
FAE is sometimes considered more devastating because individuals with
FAE are not physically recognizable as being disabled, and yet their
behaviors can lead them into trouble in school, in society and even with
the law.
Our use of the term, FAS/E (Fetal Alcohol Syndrome/Effects), refers to
the full range of disability caused by prenatal alcohol exposure. Some
prefer the terms FAS, and ARND (Alcohol Related Neurodevelopmental
Disorder) and/or ARBD (Alcohol Related Birth Defects). But we believe
the term, FAS/E, more adequately communicates the closely related nature
of the currently separated conditions. We agree with Dr. Kenneth Lyons
Jones, one of the two doctors who first identified the syndrome in the
United States, that it’s all FAS, we just haven’t figured out how to
identify the low end of the syndrome yet.
FAS/E can include a broad range of physical defects and levels of
severity in mental functioning. But the common identifying traits are
the deficits in memory, judgment and reasoning. Since FAS is the leading
preventable cause of mental retardation in the United States today, many
people (including professionals) mistakenly think that all individuals
with FAS/E are mentally retarded. But researchers now estimate that
about 75% of the individuals with FAS and 90% of those with FAE have
normal IQ’s.1
When the syndrome was first identified in the early 1970’s, this was
thought to be an advantage. However it has become evident that a normal
IQ hides the primary manifestations of the disability.  Those with FAS/E
and a normal IQ can learn information and experience consequences, but
they don’t have the judgment and reasoning to use what they have
learned to make good choices or change their behavior. So, although
their behavior looks willful, they repeatedly make the same mistakes
with a genuine air of innocence. Their behavior usually depends on their
immediate needs and influences, thus it is predictably unpredictable.
Although FAS/E is not currently recognized as a Developmental Disability
(DD), it meets the DD criteria listed in the national definition. It is
a disability that is  life long in nature, manifests itself prior to the
age of 22, and requires on-going services and supports. A Developmental
Disability must also result in substantial functional limitations in
three or more of the major life activities, such as self-care,
expressive or receptive language, mobility, self-direction, and one's
capacity for employment or independent living. Most individuals with
FAS/E have trouble in all these areas, except mobility.
If undiagnosed, individuals with FAS/E are misunderstood as rebellious,
uncooperative, lazy, stupid and/or selfish instead of being understood
as disabled. Typical behaviors associated with FAS/E include: not
connecting cause and effect, having difficulty learning from experience,
lacking remorse, and having a genuine  innocence while repeatedly
becoming involved in the same unacceptable or unlawful situations.
These individuals can be extremely vulnerable to peer influence and are
easily victimized. But they are also very manipulative and can be
emotionally volatile. Although they are typically charming, they are
very frustrating to live and work with. They characteristically struggle
in school (both academically and socially), experience mental health
problems, exhibit inappropriate sexual behavior and can easily get into
trouble with the law.2  Their lives, and consequently their families’
lives, are filled with chaos and trauma. Families struggle to raise
these children and don’t know why their consistent love and discipline
don’t work.  Many of these parents feel there is never enough time,
love, and attention to fulfill their children’s insatiable needs.
Many doctors are reluctant to diagnose FAS/E for various reasons. A
large number of children with FAS/E are under diagnosed or misdiagnosed
with Attention Deficit/Hyperactivity Disorder (ADHD or ADD). This can be
a co-existing condition with FAS/E, but basic issues and deficits cannot
be untangled until FAS/E is ruled out or confirmed. If this disability
remains undiagnosed, these individuals have great difficulty getting the
services they need to be safe and to reach their  potential.
There is a growing focus of attention on FAS/E in the United States and
around the world. Hopefully a better way to diagnose the full range of
FAS/E will be discovered and a more effective means to serve these
disabled individuals will be developed in the near future.

1  Ann Streissguth  (1997),  Fetal Alcohol Syndrome,  Paul H. Brookes
Publishing Co.,  Baltimore, Maryland,  103.

2  Ann Streissguth, Helen M. Barr, Julia Kogan, Fred L. Bookstein
(1996), Understanding the Occurrence of Secondary Disabilities in
Clients with Fetal Alcohol Syndrome and Fetal Alcohol Effects, Centers
for Disease Control and Prevention, Grant No. R04/CCR008515, 30.