This article discusses
the basics of Fetal Alcohol Syndrome and Fetal Alcohol Effects (FAS/E):
the history, nature, prevalence, causes and effects of prenatal
exposure to alcohol. Some of the unique features of FAS/E are explored,
particularly those that make it so hard to spot and those that predispose
people to nonproductive or criminal activity. The presentation
of FAS/E in Juvenile Court is discussed and put in the context of
the multiplicity of factors pertaining to delinquency; finally,
innovative interventions, approaches and resources are laid out.
Issues surrounding FAS/E as they appear in Family Court are then
explored, with emphasis on the intergenerational transmission of
this array of conditions and how we might interrupt such transmission.
ALCOHOL DAMAGE: HIDDEN EPIDEMIC IN THE COURTS
A slight boy with calm
brown eyes sat in the windowless room, apparently undaunted by the
array of authority figures surrounding him—his probation officer,
teacher, principal, aunt and unit supervisor. He was about to be
released from Juvenile Hall into the care of his exasperated aunt,
for the 8th time in his 16 years. After the P.O. rattled off the
conditions of probation, he added a bracing “OK, Bobby (not his
real name), remember this stuff. It’s all on you now.” Bobby,
looking down at his hands, smiled an angelic smile and said “OK”.
Two months later we saw him back in the Hall; he had failed to show
up for his drug test.
Bobby lives with his
aunt because his mother is in and out of rehab--mostly out. He has
16 credits—all from community or institutional schools. His little
cousins love him because he plays with them gently; gangs love him
because he will do the jobs no one else will. Practically everybody
else is pretty tired of him.
Bobby’s small body is
topped with an even smaller head—not noticeable unless you look
for it, really not until you measure it, check the chart and find
it about average for a 5-year-old. After his most recent infraction,
Bobby was now headed for the California Youth Authority, as he was
seen to be incorrigible: he runs from the Ranch, he violates Probation,
he commits an endless string of little, stupid crimes. He doesn’t
seem to learn from his mistakes or their consequences.
Thanks to an alert Fetal
Alcohol Syndrome consultant in Juvenile Treatment Court, Bobby was
referred to the FAS Clinic at our county hospital where his head
was measured, along with his eyes, his upper lip and the little
groove that runs from nose to lip. His memory and attention were
tested, his visual-perceptual abilities, balance and coordination
were tested, and his past history was reviewed in detail. His educational,
physical and interpersonal trail was littered with red flags of
organic brain damage, yet Bobby’s most consistent diagnosis over
the years was Oppositional Defiant Disorder, which translates in
most people’s minds as a bad case of simple, voluntary pig-headedness.
It turned out that Bobby
truly does have a brain like a sieve: he couldn’t remember anything
from one moment to another; attempts to touch his nose with his
index finger were mostly unsuccessful and he nearly tipped over
when his eyes were closed. His ability to narrate a first-grade-level
series of pictures resulted in fragmented bits of information with
no beginning, middle or end, and he couldn’t explain why the little
protagonist was afraid (storm noises and lights went out). Bobby
had the same benign blankness on his face throughout the diagnostic
afternoon, the sympathetic interpretation of his troubles making
no more impact on him than the stern warning of his P.O.
Damage to children from
prenatal alcohol has been noted since earliest times: in ancient
Carthage, there was a ritual forbidding the drinking of wine by
the bridal couple so that defective children would not be conceived;
Aristotle stated that “Foolish, drunken and harebrained women most
often bring forth children like unto themselves, morose and languid”.
In the Bible, Judges 13:7 says: “Behold, thou shalt conceive and
bear a son: and now drink no wine or strong drinks.
Far from a universally
held opinion, however, the idea that drinking could harm the fetus
has met with considerable controversy, and despite current and incontrovertible
evidence such controversy persists to this day. In l955, the Yale
Center for Alcohol put out a brochure with the statement that the
“…old notions about children of drunken parents being born defective
can be cast aside, together with the idea that alcohol can directly
irritate and injure the sex glands”.(as cited in Rosett, l980)
By 1978, 245 people with
FAS had been identified, the “FAS face” widely considered to be
uniquely alcohol-related, and prenatal alcohol described as the
most frequent known cause of mental retardation. (Streissguth,
Herman & Smith, l978). Since then a vast and mushrooming body
of scientific evidence has shown beyond a doubt that prenatal alcohol
does indeed damage the fetus (Institute of Medicine, 1996). Most
recently, brain imaging techniques are able to pinpoint the areas
of the brain that are most affected and sophisticated arrays of
neuropsychological testing are being used to illuminate the deficits
in functioning that result (Mattson & Riley,1995) .
In the last decade it
has become clear that “the face” of FAS is more an artifact of timing
(exposure during the third week of pregnancy) than the sole defining
marker of fetal alcohol damage. A recent estimate done by eight
of the principal researchers in FAS tells us that there are at least
three to four times as many fetal-alcohol-damaged people without
the telltale features (this is most popularly known as Fetal Alcohol
Effects) as there are with such features (Fetal Alcohol Syndrome
requires the features for diagnosis) (Sampson, Streissguth, Bookstein,
Little, Clarren, Dehaene & Hanson, 1997). They believe their
estimate that one out of a hundred people have alcohol-related brain
damage is a conservative one.
In spite of hard evidence
for the widespread damage that prenatal exposure to alcohol causes,
drinking during pregnancy persists. Part of this is caused by physicians
who will say that a drink or two doesn’t hurt; part is caused by
conditions of living that beg to be softened by a little daily oblivion;
part is caused by cognitive impairment (including not being aware
that one is pregnant) and part is caused by addiction.
How much drinking can
cause damage? Research evidence on the cellular level and with
some animal studies is unequivocal; as little as one dose of alcohol
has been demonstrated to reduce brain cell adhesion and cause neurological
deficits but research conducted on children with low levels of prenatal
exposure to alcohol has been contradictory. There is actually little
evidence that one drink or even two a day cause harm (Abel, 1998).
Studies that use an average of 14 drinks a week or similar “moderate
drinking” do show a decrease in memory and learning—but that weekly
dose could well have occurred in a couple of sittings. Most research
suggests that a high blood alcohol level is the most important factor
in fetal alcohol damage and that binge-drinkers are the most frequent
mothers of FAS children; a binge consists of 4 or 5 drinks in a
sitting, depending on the expert cited. In any case, one of the
large “40-ounce” malt liquors so favored by people without a lot
of money to spend on intoxication contains the alcohol of over four
standard drinks, so one can qualifies as a binge and can significantly
harm the fetus.
And what exactly happens
to the fetal brain to cause this damage? This is still being explored,
but there are at least three mechanisms currently documented: abnormal
cell migration patterns, reduced cell adhesion once they reach their
destinations, and abnormal cell death all along the way. The
cells actually behave a little like drunks: they wander around,
slide off the bar stool and then pass out (from various studies
cited in Institute of Medicine, l996). Nothing to take lightly
of course; the result is universally awful, but the parallel is
hard to resist.
Does heavy alcohol exposure
always cause brain damage? No one knows yet. Although a single
dose of alcohol has been shown to reduce cell adhesion during the
period of exposure, there is no evidence that even high doses are
universally destructive to the growing brain. Other factors in
combination with alcohol have been demonstrated to make such damage
more likely: tobacco, poor nutrition, stress, poverty and other
The primary disabilities
of FAS/E have been described by researchers, clinicians and caregivers.
While a common caveat in FAS/E thinking is that there is no one
profile and every person is different, the following core disabilities
occur with great frequency:
Widely varying abilities
Inability to distinguish truth from fiction
Externalization of blame
Excessive demand for attention
Self awareness, reflection
Inflexibility of thinking
Allergies, asthma, ear infections
Heart and kidney problems
Little ability to articulate
feelings Parroting of others’ speech patterns
Expressive language better than
General delay in communication
Vulnerability to mental
Why FAS/E go unrecognized?
Partial diagnoses that
mask the broader dysfunction
The constellation of
FAS/E behaviors that most commonly comes to the attention of educational,
legal or medical caregivers is really the umbrella of symptoms we
call Attention Deficit/Hyperactivity Disorder. From the above list
we can pick out the chief features of AD/HD: inattention, hyperactivity
and impulsivity; those familiar with this disorder will recognize
the many subcategories of ADHD here as well as some of the more
subtle accompanying features. (It should be noted that while most
researchers are convinced that ADHD is largely of genetic origin,
but none of the well-known studies has even asked about prenatal
exposure to alcohol. Twin studies provide most of the evidence
for genetic transmission—ignoring the fact that fraternal twins
will show differential FAS/E, where identical twins will have identical
symptoms of FAS/E [Institute of Medicine, 1996]…and that since drinking
is often a family tradition, so is prenatal alcohol damage!)
Another common diagnosis
that purports to explain behaviors of people with unrecognized FAS/E
is Bipolar Disorder. As with AD/HD, Bipolar symptoms are certainly
part of the package of fetal alcohol damage, especially in adolescence,
when the mood swings tend to be from depression to rage to irritability,
unfortunately bypassing the euphoria that adults with Bipolar often
enjoy. Since this mood disorder is seen to affect cognitive, emotional,
interpersonal and executive functioning in normal people, it is
natural to assign global causality in people with unidentified brain
By far the most common
diagnostic category in the juvenile justice system is Oppositional
Defiant Disorder, with a scattering of ODD’s more dangerous relative,
Conduct Disorder. A discussion of the general utility of these two
diagnoses will have to wait for another time, but their relation
to FAS/E must be explored for a moment: When a person can’t communicate
his or her needs very well, can’t figure out the cues of others,
is often physically uncomfortable, does badly in school and at home,
can’t organize or even remember tasks or materials—and has everybody
yelling at him or her to just try harder—we have a recipe for resistance
and defiance. As one of our youth put it, “It’s better to be bad
Any of these diagnostic
categories is partly accurate; the problem with each is that they
do not begin to cover the broad tapestry of dysfunction suffered
by people with alcohol-related brain damage. What tends to happen
most often is that unless this tapestry is identified, the real
diagnostic label that befalls people with FAS/E is “bad”—but as
with the other diagnoses, this label only describes the symptom,
not the disease.
Talking the talk
This particular kind
of brain damage is difficult to recognize for at least two other
reasons besides the partial diagnoses that siphon off understanding.
Adding to the “stealth” quality of this condition is a language
feature common to FAS/E known as “superficial fluency”: the ability
to sound as if one is carrying on a meaningful conversation when
in fact very little is being exchanged. There is difficulty articulating
one’s own real feelings and thoughts and difficulty grasping the
meaning behind others’ utterances, but a real ability to produce
a reasonable facsimile thereof! If you don’t listen carefully and
double-check what you hear, you will think the person’s cognitive
processes are in fine working order.
Lack of professional
The final reason FAS/E
is not recognized is that few clinicians are trained to look for
it. The above-mentioned diagnoses are in the DSM-IV and ICD-9;
FAS/E is not. The closest we have is “Personality change due to
a medical disorder”. Research is far ahead of practice in this
area as seen in an OB-GYN’s comment last year: “FAS? I didn’t think
there was much of that around any more.”
There are few sources
of complete diagnosis around the country; the University of Washington
originated a systematic diagnostic approach which has spawned other
diagnostic clinics around the state and a few in the Northern Midwest.
(Astley & Clarren,1999) Our clinic in San Jose, California is
modeled after this approach as well, and is the only source of fetal
alcohol spectrum diagnosis south of Seattle. (See below for further
discussion of diagnosis.) There may be others, but people around
the country describe great difficulty finding anyone who understands,
let alone can diagnose, this fabric of disorders.
How does FAS/E predispose
a person to non-productive or even criminal behavior?
In another article in
this edition, Dr. Snyder discusses the connection between AD/HD
and delinquency. As noted above, a solid core of FAS/E behaviors
fall into the AD/HD realm, with a few added features that make bad
behavior that much more likely. These include (usually) a lower
IQ, more severely impaired executive functioning, inflexibility
of thinking/rigid problem solving, explosive or rage disorders,
brain-based difficulty telling truth from fantasy, and sensory integration
Let us return for a moment
to Bobby, who keeps bouncing back into the system partly because
he cannot imagine a future, and thus does not make sure he will
make it to his drug testing appointment. This appointment might
as well be in the next lifetime for all he knows. As well-known
AD/HD researcher Russell Barkley notes, where normal people can
imagine a future of around six to eight weeks, people with AD/HD
can imagine a future of about 8 hours (Barkley, 1990). This applies
on an even larger scale and across more dimensions with FAS/E (Mattson,
Goodman, Caine, Delis and Riley, 1999).
There are many people
with FAS/E with average or above-average intelligence as measured
by IQ tests, but little ability to “do life. More often, prenatal
alcohol damage has affected general cognitive functioning and is
now understood to be the primary known cause of mental retardation.
There is a surprising percentage of youth in Juvenile Hall with
cognitive impairment. Exact numbers are not available, but Special
Education staff in the Santa Clara County facility estimate that
out of 300 inmates, at least ten of them have IQ’s under 70 at any
given time. Probation staff involved in Special Education referral
estimate that three quarters of their referrals fall into the 65-75
range of IQ, and that upwards of 90% of those were exposed to alcohol.
With this reduced capacity to reason, remember, solve problems,
organize information or grasp concepts, poor decisions are much
more likely. One of the most common categories of these poor decisions
is related to gang activity: an adolescent with impaired ability
to think things through is a good candidate for those gang-related
tasks that carry the highest risk of either getting caught or getting
hurt; gang leaders instinctively know this and use it to great advantage.
For people with alcohol-related
brain damage (and many people with brain damage in general) this
inability to imagine a future is consistent with a general inability
to see anything that is not right in front of their noses. Time,
space, truth and other people are the most problematic dimensions
Imagine, literally, a
big picture. There is a lovely sailboat in the sunshine on a calm
blue ocean; birds fly above and fishes doubtless swim below. There
is also an enormous steamship heading directly for the sailboat.
Imagine you are standing one foot away from this picture and you
look at it without turning your head. Asked what the picture is
about, you will describe the piece of the scene that is right in
front of you. As you step to the side one foot at a time and only
look right in front without tying in what you saw before, your interpretation
of the picture will change, one little section at a time. “It’s
about a sailboat”…”It’s about some birds”…”It’s about a steamship”.
People with FAS/E only
tend to see what is right in front of their noses at any given time.
This is independent of IQ, upbringing, other talents or even intention.
“Getting the Big Picture” is the general caption for the whole array
of executive functioning, and if we can only see the little quadrant
directly in our line of vision we will
- Not imagine a future
- Not save money or
plan for much of anything at all
- Nap, eat, drink, have
sex, no matter what our boss thinks we should be doing
- Not be thoughtful
toward other people or understand their reactions when offended
- Forget what we came
into the room for
- Drive through the
pesky red light if we’re in a hurry
- Not be able to explain
- Not understand that
our actions have consequences
- Take things that appeal
- Leave dreadful messes
for others to clean up
- Not be able to predict
what will happen
It is the experience-based
belief of this writer that poor executive functioning is behind
most of what we normally call “irresponsibility”, and behind a
great deal of what we attribute to deliberate bad choices and weak
moral character. It is an inability to understand abstract concepts
like responsibilities, good choices and strong morals. People with
FAS/E can only parrot these principles by rote; they cannot apply
them meaningfully to their own lives.
Inflexibility and Explosiveness
To this far-reaching
bundle of big-picture-challenged behaviors we add a few features
of FAS/E that can push a merely wasted life into a destructive one.
The brain-based traits of inflexibility and explosiveness are particularly
dangerous and often occur together, igniting an all-too-common response
to frustration: “If at first you don’t succeed, throw that sucker
across the room!” This behavior pattern, identifiable in early
childhood, does not lead inevitably to a lifetime of violence, but
it certainly makes thoughtful, productive responses less likely.
Another problematic and
common side of prenatal-alcohol-related brain damage is the tendency
to lie, which often accompanies tendencies to cheat and steal.
“Moral retardation” appears with FAS/E even in families where a
child has been adopted in infancy, and consistently taught the values
of honesty and respect for people and property. It is one of the
most heartbreaking experiences of adoptive families that their children
persist in behaving like street urchins despite the best parenting
Sensory integration refers
to the system of processing incoming stimuli through the senses.
For most of us, the five senses are calibrated to a level of sensitivity
that allows us to enjoy this incoming information and alerts us
to danger or need through discomfort. For some people, the level
of sensitivity is either too high, too low or both in any or all
of these areas. Prenatal alcohol exposure often causes such imbalance:
the tags on the back of shirts are irritating, only certain foods
taste right, one has to keep changing body position, the bell at
school sets off a flight reaction—or, in the opposite direction,
wounds are not noticed, food is rejected even when needed, sleep
is the last thing on a child’s agenda when tired.
What turns sensory integration
difficulties from private discomfort into troubling behavior has
to do with the additive effects of explosivity, poor ability to
delay impulses and impaired executive functioning. Chronic discomfort
makes it hard for anyone to remain cheerful and productive; people
with FAS/E are quicker than most to get upset, slower to calm down,
and the least likely to address basic needs like nutrition, shelter
from the elements or rest, let alone a toothache. To top it all
off, drugs and alcohol offer an appealing respite from all the internal
and external noise.
So we have a person in
constant upset and discomfort with no reliable remedy, poor impulse
control, rage attacks—and high.
The next section explores
the evolution of a prenatal-alcohol-affected child into a juvenile
delinquent, how he or she often appears to the judicial community,
the typical course of that relationship and, finally, what we can
How an FAS/E child can
turn into a juvenile delinquent
The primary disabilities
of prenatal alcohol damage were listed previously under Effects.
These disabilities can turn into troubling or dangerous behavior
when they are not identified and treated. In a seminal series of
studies spanning over 15 years and still going strong, Ann Streissguth
of the University of Washington has followed a group of around 500
people with FAS/E. ( Streissguth, Barr, Kogan, & Bookstein,1996).
She found that in the absence of identification and appropriate
treatment, life outcomes she calls secondary disabilities develop
in the following proportions:
Disrupted school experience
had plagued 60% of the adults and adolescents, stemming from attentional
problems and repeatedly incomplete schoolwork. Behavior problems
in school fell into the categories of not getting along with peers
(60%) and being repeatedly disruptive in class (55%-60%). Sixty
% of the adolescents and 14% of the children had had trouble
with the law, with shoplifting and theft as the most frequent
type of crime. Fifty percent of adolescents and adults had been
confined, either in mental health programs, inpatient drug
and alcohol treatment or jail. Forty-nine percent of adolescents
and adults and 39% of children had displayed inappropriate sexual
behavior. Of people who were at least 21 years old, two additional
secondary disabilities were noted: Dependent living characterized
80% of the sample, and 80% had problems with employment.
for these high levels of secondary disabilities found in people
with FAS/FAE is that the primary disabilities of permanent organic
brain damage are hidden, leading schools, families, the justice
system and society at large to expect normal behavior and reasoning.
Without a low IQ score, obvious mental illness or physical signs
of birth defect, societal protection is lacking, and blame or punishment
is all too often the only response.
This research also examined
risk and protective factors associated with secondary disabilities.
Risk factors were those that were most associated with elevated
rates of secondary disabilities; protective factors resulted in
lower rates. Protective factors included:
Living in a stable and nurturing home of good quality
Not having frequent changes of household
Not being a victim of violence
Having received developmental disabilities services
Having been diagnosed before the age of 6
Having a diagnosis of FAS rather than FAE
Having an IQ score below 70
The last two factors
may seem counterintuitive. The reason that having FAE leads to
worse outcomes than having FAS is that FAE is truly invisible—at
least with FAS there is a chance that the facial features will be
recognized as a birth defect signaling brain damage, and the resulting
behavior will be interpreted accordingly, unlike someone who looks
completely normal. The advantage of the more severe cognitive impairment
of the lower IQ is similar—the odd or irresponsible behavior of
a mentally retarded person will more likely be met with increased
services and support, not punishment and shame.
conclusion from this study was a strong recommendation that early
diagnosis be made available wherever warranted, so that support
services could be mobilized, appropriate educational and parenting
practices could be implemented, and self-image could be enhanced
rather than continually eroded.
Few of the adolescents
in Juvenile Hall have had a stable and nurturing home, least of
all those who were exposed to drugs and alcohol since conception.
“Frequent changes of household” characterize many, especially the
young women, nearly all of whom (in this writer’s jurisdiction,
Santa Clara County) have spent time in the Children’s Shelter.
78% of the youth in our county’s Hall were found to have been a
victim of or witness to violence, according to an informal study
done by the Department of Alcohol and Drugs.
Bobby lived with his
mother off and on for the first two years of his life, sometimes
at shelters and sometimes with relatives. Then Children’s Protective
Service intervened; he lived in five foster homes until the age
of 12, when his encounters with the authorities took a more punitive
turn. Over the next four years, Bobby was in and out of correctional
institutions eight times. He has seen two people killed and was
involved in an accidental shooting. Although he received Special
Education services, he never achieved anything approaching success
in school. After about the third grade he preferred not to go to
school, and the system did little to remedy his truancy. Bobby’s
behavior was never deliberately malicious, but he found himself
in the wrong place at the wrong time ALL the time, and almost never
in the right place at the appointed time.
Bobby’s probation officer
had long ago lost patience with this minor who had so often told
him the most boldfaced lies, refused to go to school and never bothered
to show up for meetings. The P.O. knew that Bobby had an IQ in
the 70’s and figured that’s why he didn’t do so well in school,
but the rest of it was surely deliberate. He believed that the
only way to get Bobby’s attention was to send him to California
Youth Authority, where they would really teach him a lesson…he wouldn’t
get away with any of this nonsense there!
Breaking promises, failing
to appear, ignoring clear orders—and then lying about it all. This
pattern is not atypical of many of our FAS/E youth; the ones who
wind up in the juvenile justice system are those who have developed
secondary disabilities because they were not identified and treated
as people with the primary disabilities associated with brain damage.
Youth with FAS/E who do not appear in the system are those who have
been supported with appropriate interventions. They may have similar
organic tendencies to fall through on promises, forget where they’re
going, not grasp the significance of instructions—and even confuse
truth with fiction, but they have (by definition) been successfully
guided to a life with legal pleasures and sufficient impulse-control
to avoid criminal activity.
Once in the system, youth
with FAS/E generally keep cycling through for curfew violations,
associating with the wrong people, drug and alcohol consumption,
truancy, shoplifting, or minor sexual offenses (often a matter of
accepting the wrong invitation). Normal teens, once they have been
caught and want to regain their autonomy, understand how to curb
or hide these impulses long enough to get off probation. People
with FAS/E do not have the ability, for so many reasons outlined
in this article, to plan for their future, curb their impulses or,
ultimately, regain their autonomy. And to cement their fate, they
haven’t been graced with the ability to own up to their mistakes.
Where are we now and
what can we do?
“External brain” is a
phrase frequently heard in the FAS field. With defects in executive
functioning, one needs to recruit an outside executive—someone who
help will mind the store, captain the ship. Successful early intervention
of the sort that prevents secondary disabilities helps a child understand
that he or she has some gaps in functioning, that it isn’t his or
her fault, and that it’s important to ask for help. But for the
unlucky 99% of kids whose disabilities are not identified, a self
image that is rotten with shame and alienation often creates a crust
of “I’m fine; my only problem is you; all I need is freedom”…which
is exactly what they do not need. As with many allergies, that
which we crave the most is what makes us the sickest--while freedom
is what these youth crave, what they really need is external structure.
The problem is that until they are able to welcome voluntary structure,
they will continue to gravitate toward the involuntary kind.
Ultimately of course
the very best we could do is early diagnosis and intervention, with
the child and the family. All is not lost, however, with our teenagers.
Useful responses for youth with FAS/E include the following: Accurate
diagnosis, education of caregivers about the nature of the brain
damage, medication support, accommodations in school and the legal
system, sentencing alternatives and to whatever degree possible,
coaching /mentoring, education of the youth him- or herself
As noted above, diagnosis
is much harder to come by than it should be, and than it needs to
be. The Fetal Alcohol Spectrum Diagnostic Clinic at the county
hospital in San Jose began a little over a year ago, and has seen
over 50 children in its once-a-week sessions, including several
youth from Juvenile Hall. The team is made up of a pediatric neurologist,
a speech/language pathologist, a physical therapist or occupational
therapist, a psychotherapist, an educational specialist, a public
health nurse and a psychologist. Records are reviewed in advance,
and on the day of the clinic visit the patient is tested by the
speech/language pathologist (using material developed specifically
for FAS evaluation in addition to standard testing including learning
and memory) and the PT/OT, who checks neuromotor and perceptual
functioning. At the same time the caregivers are interviewed to
explore real-life behaviors and reactions. After the team meets
privately to share findings and discuss diagnostic conclusions,
this information is shared with the patient and caregivers, along
with recommendations, resources and reading material. The caregiver
is then contacted a few weeks later to see if there are additional
concerns or questions.
The diagnosis is not
a black-or-white decision, FAS or no FAS, because this is a whole
fabric of disorders occurring in varying severities--and because
many of the findings may be attributable to factors other than prenatal
alcohol exposure. If there are significant delays in at least
three areas of functioning connected to organic impairment, facial
features typical of FAS, growth retardation and documented history
of prenatal exposure, then the diagnosis is Fetal Alcohol Syndrome.
By far the more common range of diagnoses are in the Fetal Alcohol
Effects category (equally brain-damaged without the physical markings).
After diagnosis comes
education with caregivers, teachers, probation officer, counselors,
physicians and, as much as possible, the patient him or herself.
Aside from specific recommendations for structuring life in such
a way that meltdowns are minimized and productive activity is maximized,
the main recommendation is to try on the lens of brain damage as
explanation for the irritating (or enraging, or hurtful, or destructive)
behaviors of the past. Quite often this will start a ripple of
changes that serves both the youth and the system. When Bobby’s
PO heard the results of the testing he said, “You mean when he tells
me that he forgot the meeting he’s actually telling me the truth?!”
Some small changes were made so that Bobby’s memory didn’t have
to hold more than it was able to; Bobby’s behavior on the unit has
improved and he is actually helping out in class now.
Medication may have been
tried in the past with previous diagnoses of AD/HD. Stimulants
are successful with these symptoms, although research indicates
that short-acting Ritalin is less likely to work well with FAS-related
AD/HD than other stimulants. Other aspects of FAS/E are medically
treatable as well, especially the mood disorders. Parents report
remarkable improvement in ability to relate to others, calm down,
focus and stay put. Even parents who are philosophically opposed
to medications have found them to be lifesavers with their severely
Juvenile Treatment Court
is a good example of the “shorter leash” approach that works well
with youth in need of a higher degree of external brain than the
normal teenager who just happened to get caught. Drug testing in
JTC is frequent and random, school attendance is checked, obedience
to parents is a condition of probation and is monitored, and appearances
before the judge occur weekly during the first phase of JTC. There
is a whole team of adjunct caregivers in court every time the youth
appears: public health nurse, social worker, FAS/LD/ADHD consultant,
lifeskills teacher and community workers, as well as counselors
and defense attorney. The circle is a firm, affectionate, often
good-humored one with very few cracks to fall through--much to the
chagrin of the youth in the beginning of the program. By the end
(at least a year later), however, the affection is often mutual
and palpable. As part of the program, educational, health, medical,
family and mental health needs are monitored and met where possible.
The emphasis is on celebrating success and growth while maintaining
firm limits with (ideally) immediate consequences for infraction.
youth are not only out of control themselves, they are often the
victims of bullying and exploitation. At least three counties are
considering providing a separate unit that this writer is aware
of for juvenile offenders with FAS/E, traumatic brain injury or
other organic disorders. The purpose would be at least protective
of both society and the offender, but ideally habilitative: teaching
directly aimed at self-understanding and self-acceptance, guidance
toward viable work options, lifeskills, interpersonal relations
and emotional self-regulation.
Raising FAS/E children
What can we do
Screening and assessment
is recommended with people in our system suspected of having brain
dysfunction, especially those charged with raising a child. Once
identification has occurred, appropriate, supportive scaffolding
can be put in place. Many family courts around the country already
use some combination of supports, with mentors, parenting programs,
specialized family reunification programs for substance-abusing
parents, family conferencing and so on. Some of these use principles
appropriate to FAS/E parents already, including a simple, comprehensive,
very tightly structured and encouraging approach.
A few innovative programs
briefly described below are likely to succeed with FAS/E as well
as non-brain-damaged clients. The only missing element, common to
all such programs, is longevity: people with serious impairments
in executive functioning will need external structure all their
lives, and the likelihood of reappearance in the system is high
without such structure in place.
Family Drug Court
combines dependency and treatment issues, tightening the net of
monitoring and support, with regular drug testing, identifying and
addressing related needs, frequent encouragement and mentorship;
specific aspects of this new court vary across the country.
is a program in San Francisco with short-term infant residential
treatment for drug and alcohol exposed children. The goal is to
reunite infants with their birth parents, extended family, or an
adoptive family within six months of placement. The program includes
early intervention to promote healthy physical development, positive
neurobehavioral organization and positive attachment to significant
adults, developmental assessment and followup services, case management,
well baby care, substance abuse treatment, parenting classes, life
skills training and in-home services.
Shared Family Care
(SFC) places an entire family with a host family trained to mentor
and support the biological parents. Outcomes range from reunification
and prevention of removal to the decision to terminate parental
rights. SFC programs exist around the country: Minnesota has a
Whole Family Placement Program, Crime Prevention Association operates
A New Life program in Philadelphia, PA., and pilot programs are
being evaluated in California and Colorado.
makes high-quality, on-call psychological services available to
at-risk families at any hour of the day or night, in addition to
regular counseling and addressing educational, vocational or other
needs. This collaborative program operates on the premise that
advice or counseling must be in a real-life context, aimed at concrete
needs and problems rather than theoretical “issues,” and must stay
oriented to the clients’ own expressed priorities. It is an intensive
wrap-around-style approach with specific training and monitoring
for its providers.
The Parent-Child Assistance
Program (P-CAP) in the state of Washington addresses the risks
of neurological impairment and compromised home environment that
threaten the children of substance-abusing mothers. Its goals are
to help mothers build and maintain healthy independent family lives,
to assure that children are in safe and stable homes, and to prevent
future births of alcohol and drug-affected babies. P-CAP uses
trained and supervised paraprofessional advocates who each work
with 15 clients for three years, assisting in identifying personal
goals, obtaining alcohol and drug treatment, staying in recovery,
choosing a family planning method, connecting with community services,
transportation to appointments, solving housing, domestic violence
and child custody problems and resolving system service barriers.
This article has outlined
the prevalence, causes and effects of FAS/E, and explored some of
the ramifications of this condition throughout our juvenile and
family court systems. It was the intention of this writer to raise
awareness of the depth, breadth and nature of the havoc wrought
by prenatal alcohol damage, so that interventions can be aimed at
the actual target of neurological impairment instead of the shifting
masquerade of deliberate disobedience. Where brain damage is thought
to be present, thorough diagnosis, a tight structure, appropriate
medications and community support are infinitely more likely to
prevent re-offense and keep society safe than the revolving door
of detention, release and “OK, Bobby, it’s all on you now”.
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