Table
of Contents
by: Fred J. Boland, Ph. D., Rebecca Burrill, Michelle Duwyn
and Jennifer Karp July, 1998
Table of Contents
EXECUTIVE
SUMMARY
Recommendations
PART
1: BACKGROUND
Diagnosis
and Description
Prenatal
and Postnatal Growth Delay
Distinct
Facial Dysmorphology
Central
Nervous System Dysfunction
Fetal
Alcohol Effects
Issues
in the Diagnosis of Childhood FAS/FAE
Incidence
and Prevalence of FAS/FAE
Aboriginal
Populations
Estimated
Cost of FAS
Maternal
Risk Factors
PART
2: COURSE AND CONSEQUENCES
Infancy
Preschool
Years
School-Age
Years
Attention
deficits
Hyperactivity.
Learning
problems.
Information
processing deficits
Memory
impairments
Communication
difficulties.
Adolescence
and Adulthood
Primary
Disabilities
Adaptive
Functioning
Secondary
disabilities
Risk
and Protective Factors
FAS/FAE
and Delinquency
PART
3: FAS/FAE IN THE CRIMINAL JUSTICE SYSTEM
Screening
and Diagnosis
Maternal
Drinking History
Physical
Features
Cognitive
Functioning.
Social
and Behavioral Functioning.
Issues
in Identification and Diagnosis
Recommendations
Institutional
Management and Rehabilitation Programs
Awareness
and Management
Recommendations
Rehabilitation
Programs.
Recommendations
Risk
Management and Aftercare
Recommendations
Final
Comments
References
APPENDIX
A
EXECUTIVE SUMMARY
Damage resulting from alcohol to the fetus has been observed
since biblical times, yet not until 1973 was it formally recognized
as Fetal Alcohol Syndrome (FAS). Diagnosis of FAS requires a
positive history of maternal alcohol consumption during pregnancy,
as well as three criteria including prenatal and/or postnatal growth
delay, characteristic cranio-facial anomalies, and central nervous
system impairments.
An accumulation of research has also indicated more subtle forms
of FAS which have been termed Fetal Alcohol Effects (FAE) and which
often have two but not three of the formal features of FAS. In both
FAS and FAE the damage is permanent.
At this point in time there are problems with diagnosing FAS/FAE
in children, but with awareness on the part of health professionals
and advances in knowledge and techniques, progress continues to be
made.
The present estimate of the world incidence of FAS is 1.9 cases
per 1000, and there is currently no national data for Canadian
estimates of FAS or FAE. However, it appears that among certain
Canadian Aboriginal groups, the incidence of FAS/FAE is much higher.
In addition to alcohol consumption and patterns of drinking
alcohol by mothers, it should be recognized that there are a number
of other situational and social maternal risk factors which are
related to FAS/FAE such as socioeconomic status, multiple drug use,
and poor health.
Infants with FAS/FAE display primary disabilities such as
irritability, jitteriness, tremors, weak suck, problems with
sleeping and eating, failure to thrive, delayed development, poor
motor control and poor habituation.
In the preschool years, problems such as hyperactivity, attention
problems, perceptual difficulties, language problems and poor motor
coordination are common.
Once a child with FAS/FAE reaches school-age the primary
disabilities are hyperactivity, attention deficits, learning
disabilities, arithmetic difficulties, cognitive deficits, language
problems and poor impulse control.
In adolescence and adulthood the primary difficulties are memory
impairments, problems with judgment and abstract reasoning and poor
adaptive functioning. Some common secondary disabilities
characteristic of adolescents and adults with FAS/FAE include being
easily victimized, unfocused and distractable, difficulty handling
money, problems learning from experience, trouble understanding
consequences and perceiving social cues, poor frustration tolerance,
inappropriate sexual behaviors, substance abuse, mental health
problems and trouble with the law.
Common risk factors which may increase the number of secondary
disabilities include poor home environment, abuse and neglect, and
familial upheaval. Common protective factors which may reduce the
number of secondary disabilities are a stable and supportive home
environment and not being a victim of violence.
There is a considerable link between FAS/FAE, attention deficit
disorder with or without hyperactivity, conduct disorder and
delinquency and crime. The predictors that appear to be common to
both individuals with FAS/FAE and individuals who become delinquent
are hyperactivity, impulsivity, attention deficit disorder, low
intelligence, poor school achievement, antisocial behavior and poor
parental child-rearing.
We are only now learning about adults with FAS/FAE and know
little about how to treat their multiple problems and nothing about
their response to treatment efforts. We do know that many will come
into contact with the criminal justice system and CSC in particular.
A primary requirement is to identify these individuals in order that
researchers can identify their treatment need and design, offer and
evaluate correctional programs that will consider the particular
cognitive and behavioral deficits of these individuals. The
following recommendations are based on a review of the literature on
FAS/FAE and how this information might be applied to assessment and
programming strategies used by Correctional Service Canada:
Recommendations
• That the criminal justice system consider initiating its own
pre-sentence investigative screening to determine if the individual
in question has ever received a diagnosis of FAS/FAE.
This would allow for the primary and secondary disabilities
associated with FAS/FAE to
impact on all aspects of the criminal justice process from
prosecution to parole release.
FAS/FAE individuals are definitely at increased risk for coming
in contact with the criminal justice system and as medical personal
become more aware of FAS/FAE the availability of an early diagnosis
is more likely.
- It is likely that cases of FAS/FAE continue to enter the
prison system unrecognized. Correctional Service Canada might
consider developing a practical screening instrument for
identifying suspected cases of FAS/FAE early in the incarceration
process or acquiring such an instrument if one becomes available
elsewhere.
The Offender Intake Assessment currently used by CSC may be a
good place to start. What is needed is research that would determine
if identifiable cases of FAS/FAE can be distinguished from patterns
shown by the general population of offenders on this instrument.
Alternatively, Streissguth’s research group in Seattle, Washington
has made considerable progress using a variety of instruments such
as the Vineland Adaptive Behavior (and Maladaptive Behavior) Scale,
the Fetal Alcohol Behavior Scale, the Symptom Checklist and the Life
History Interview, supplemented with IQ and cognitive testing.
Advances in photo identification are also promising. Suspected cases
of FAS/FAE can be referred to a medical specialist for formal
diagnosis.
- As an alternative to diagnosis, Correctional Service Canada
might direct its screening efforts at identifying offender’s
specific learning problems (e.g. arithmetic disability, difficulty
abstracting), attention problems (e.g. attention deficit
disorder), and behavioral attributes (e.g. poor self-regulation,
substance abuse) along the lines suggested by Spohr and
Steinhausen (1987).
For reasons mentioned earlier in this paper, diagnosing adults
with FAS/FAE is currently a difficult feat. The strategy suggested
above also provides specific information about deficits and problems
that can be very useful not only with those diagnosed with FAS/FAE,
but to any inmate who is experiencing these difficulties. Thus, any
services or programs offered to inmates would be based on identified
need rather than diagnosis. In some ways this strategy would be an
extension of the screening and assessment that CSC currently carries
out with such batteries as the Computerized Lifestyle Assessment
Inventory.
- If screening and diagnosis, or screening for FAS/FAE related
problems, proves feasible, we recommend a centralized,
computerized data base be instituted.
This data base should prove valuable for research purposes, for
institutional programming, and for risk management after release
from prison.
- The criminal justice system and CSC in particular might
consider designing an FAS/FAE Awareness Manual and implement
in-service training at all levels in order to educate and raise
awareness about this condition.
Program officers and psychologists might be considered for more
in depth training about FAS/FAE and eventually take over the role of
increasing awareness in other personnel, such as parole and
classification officers.
- Should a sufficient number of FAS/FAE inmates be identified at
a particular institution, CSC might consider appointing an
advocate, such as a program officer very familiar with FAS/FAE, to
help manage their behavior and look after their best interest.
Such an advocate would also be an excellent candidate for
facilitating FAS/FAE awareness programs.
- Provided that inmates with FAS/FAE can be identified, CSC
might consider designing and evaluating a special institutional
program for this population that takes into consideration their
specific cognitive deficits and behavioral patterns.
The suggested strategy would be to modify existing, well
recognized programs in the areas of social and life skills,
cognitive skills, substance abuse and anger management in the
direction of making them more structured, concrete and repetitive,
allowing more time for review and practice, and presenting material
in shorter but regular segments. One strategy for accomplishing this
may be to ask the original authors of these programs to consult with
others who have expertise in FAS/FAE and/or expertise in working
with developmentally handicapped or brain damaged adults. Also,
given the high proportion of Aboriginals with FAS/FAE and their
similar over representation in the criminal justice system, it may
be useful to consult with a culturally sensitive expert in this
area.
- Programs should be carried out in small groups by facilitators
who understand the cognitive, and behavioral deficits of FAS/FAE
individuals.
- Treatment of mental health problems in FAS/FAE offenders, such
as depression and suicide ideation are best dealt with in
individual therapy by psychologists or psychiatrists with
knowledge of FAS/FAE patterns.
- Because of their permanent neurological deficits and the many
secondary problems these deficits generate, FAS/FAE inmates will
require extensive planning for their release.
Safe and appropriate housing that allows them to establish
structure and routine, job training that allows them to work within
their abilities, continued social and life skills training that
allows them to improve their adaptive functioning, a long term
relapse prevention and maintenance program for those with substance
abuse needs, and close and supportive monitoring would all help
ensure that a stable and successful transition to community life
would be made. As with institutional programs, evaluation should be
built in to ensure further refinement as to what works with this
difficult population.
FETAL ALCOHOL SYNDROME: IMPLICATIONS FOR
CORRECTIONAL SERVICES
This report reviews the literature on Fetal Alcohol
Syndrome from the perspective of the implications this condition
might have for the criminal justice system and for Correctional
Service Canada. The report is presented in three parts. Part 1
provides a basic background about the disorder. Part 11 traces the
course and consequences of this condition, including the connection
to delinquency and crime. Part 111 considers the possibility of
identifying fetal alcohol syndrome and related effects in
individuals who come in contact with the criminal justice system,
and how institutional and post-release programs might best fit their
needs.
PART 1: BACKGROUND
Alcohol is the one of most toxic substances voluntarily consumed
by humans. Alcohol is also capable of disrupting fetal development
as it freely crosses the placenta in pregnant women who choose to
consume alcohol during their pregnancies. The metabolism and
elimination of alcohol are slower in the fetus (approximately half
the adult rate), and the concentration of alcohol is at least as
high in the fetus as in the mother’s blood (Niccols, 1994; Streissguth, 1983; Abel,
1990).
Reference to negative effects of alcohol to the fetus can be
found in documents dating back as far reaching as the Old Testament
(Niccols, 1994). However, not until much more recently were possible
effects of drinking alcohol on offspring seriously explored in North
America and in Europe. Slowly during the 1950's and 1960's, studies
began to focus on the hereditary basis of birth defects in disorders
like Down Syndrome, and during this time period French researchers
also began describing children of alcoholic mothers as having
malformations and growth deficits (Abel, 1990). Research surrounding
pregnancy and alcohol increasingly became of interest with
publications identifying a variety of alcohol related birth defects,
and finally in 1973 a pattern of physical features and behavioural
deficits found in infants and children of mothers who consumed
alcohol during pregnancy was formally recognized as FAS ( Jones and
Smith, 1973). This medical term brought the existence of FAS to the
attention of many professionals, and it clearly defined this
syndrome in terms of the causal agent of alcohol.
The past two decades have since been filled with numerous
studies, clinical reports, and experimental research with animals,
indicating that alcohol is clearly a teratogen which can have
numerous and serious consequences on fetal development. The purpose
of the first section of this report is to provide a review of Fetal
Alcohol Syndrome as a complex, multi-determined syndrome which has
serious implications for problematic behaviour and development.
Diagnosis and Description
Fetal Alcohol Syndrome is one form of alcohol related birth
defects which subsumes a number of specific abnormalities in
children whose mothers consumed alcohol during pregnancy. In
addition to the identification of a positive history of maternal
alcohol consumption during pregnancy, there are three core
diagnostic criteria which must be met for a clinical diagnosis of
FAS (Conry, 1990). These features include: 1) prenatal and/or
postnatal growth delay and retardation; 2) characteristic
cranio-facial anomalies; and 3) central nervous system (CNS)
impairments.
Prenatal and Postnatal Growth Delay. Children
born with FAS have a reduction in body weight, height and head
circumference (Streissguth et al., 1991; Abel, 1990 ). As infants,
American studies have indicated that the median weight of all live
children born with FAS is 4 lb 11 oz, which is below the 7 lb 7 oz
median in U.S. infants (Abel, 1990). Continuing into childhood and
adolescence, the head circumference of these children remains below
the tenth percentile (Niccols, 1994; Abkarian, 1992) or two standard
deviations below the mean (Streissguth et al., 1991). Additional
studies have indicated that patients with FAS are still below the
third percentile in cranial growth in adolescence (Shaywitz, Cohen
& Shaywitz, 1980; Niccols, 1994). This cluster of growth
deficiencies are among the most common effects observed in children
with FAS (Abel, 1990), but birth weights and heights may differ
depending on the amount of alcohol consumed during pregnancy. Severe
growth deficits are also usually related to severe intellectual
disabilities (Abkarian, 1992).
Distinct Facial Dysmorphology. The pattern of
facial dysmorphology observed in children with FAS is the criterion
that is most specific to this syndrome (Huebert & Raftis, 1996).
In fact, a diagnosis of FAS can be made based solely on a physical
examination (Huebert & Raftis, 1996), but it is helpful to
establish the maternal drinking history during pregnancy. Also,
where maternal drinking is low or moderate, facial features may not
be distinct enough for an agreement of diagnosis (Abel, 1990).
The characteristic pattern of facial abnormalities most commonly
reported in FAS are short palpebral fissures (horizontal length of
eyes), epicanthic folds (abnormal skin folds in the inner corner of
the eye), long and flattened philtrum (space between nose and upper
lip), flattened maxilla (bones forming the jaws and midface), and
shortened nose (Huebert & Raftis, 1996; Abel 1990).
In addition to these discriminating features, there are also a
number of associated features of FAS. Of these secondary anomalies,
visual disorders such as optic nerve anomalies (cataracts) and
myopia, oral problems such as cleft palate and dental problems
(crossbite, overbite) and ear abnormalities are common (Church &
Kaltenbach, 1997). Children with FAS are at high risk for a variety
of hearing disorders, and the majority of FAS children have at least
one type of hearing problem (Church & Kaltenbach, 1997). The
four most commonly occurring hearing disorders associated with FAS
are developmental delays in auditory maturation, sensory neural
hearing loss, intermittent conductive hearing loss, and central
hearing loss, all of which can result in permanent impairment to
hearing, language, and mental abilities (Church & Kaltenbach,
1997). Adequate hearing is critical for proper speech and language
acquisition and comprehension, so hearing disorders may worsen
existing behavioural and intellectual problems, thus leading to
learning disabilities, inattention, language pathology and
disruptive behaviours (Church & Kaltenbach, 1997).
Central Nervous System Dysfunction. The
influence of prenatal alcohol exposure on central nervous system
(CNS) development has also been explored. Recent research has
indicated that glial cells which compromise approximately half of
the brain’s volume and which play an important role in brain
development are sensitive to alcohol and increase the vulnerability
of the brain to serious damage (Lancaster, 1994). Niccols (1994) has
proposed several different stages of embryo development during which
alcohol damages the central nervous system differentially: from
conception to the first weeks of pregnancy alcohol acts as a
cytotoxic agent causing cell death and chromosomal abnormalities;
From four weeks to ten weeks in utero alcohol exposure leads to
abnormal cell migration, cell loss and damage, disorganized cell
tissue structure, and microcephaly; and from eight to ten weeks of
pregnancy neurotransmitter production is interfered with leading to
suppression of growth hormones, and abnormal formation of neural
synapses resulting in neurological deficits (Niccols, 1994 ).
Streissguth (1997) further adds that the greatest period of
vulnerability in the brain is uncertain; it seems that all
trimesters during pregnancy are critical for development.
Central nervous system damage from prenatal alcohol exposure
results in permanent impairments such as neurological abnormalities,
behavioural dysfunctions, developmental delays, and intellectual
impairment (Huebert & Raftis, 1996). As a result of these
damaging effects on the developing nervous system, an abundance of
research has indicated cognitive-behavioural difficulties in
children with FAS. These problems include impairment of selective
attention and decreased speed of information processing (Yellin,
1984; Lancaster, 1994), delayed and disordered motor development,
disordered speech and language development, short term memory
deficits, learning difficulties, and hyperactivity and impulsivity
(Kodituwakku et al., 1995; Abkarian, 1992). Attentional problems
(which have been identified as a major deficit in FAS children) are
especially problematic because they have negative consequences on
other cognitive functions like rehearsing and storing information in
memory, and information processing (Kodituwakku et al., 1995). Other
research by Mattson et al. (1996) has suggested that the locus of
memory impairments may be at the encoding level of information
processing where individuals with FAS have difficulty inhibiting
correct responses. Mattson et al. (1996) propose that the brain
areas involved in these response inhibition deficits are the
hippocampus, the frontal lobes, and the basil ganglia.
As information accumulates about specific alcohol related
cognitive deficits, it appears that FAS individuals have profound
and permanent learning and intellectual impairments. Although the
range of intellectual functioning varies, FAS is now considered to
be the leading cause of mental retardation in North America
(Streissguth et al., 1991). Most average intellectual assessments of
FAS children, utilizing a variety of IQ tests, estimate they
function at a level from 65-70 IQ point scores. Scores below 70
indicate mental retardation. Abel (1990) found an average IQ of 67
among FAS children, with 53% of patients scoring below 70 in his
study, Conry (1990) similarly found 68% of FAS patients below 70,
Streissguth et al. (1991) found an average of 66 with 58% scoring
below 70, and Abkarian (1992) observed an average of 65. These
studies all reported wide ranges of impairment from 20 (severe
retardation) to 105 (normal). Often, such poor intellectual
functioning results in serious academic disabilities (Streissguth et
al., 1991).
What is clear from the diagnostic criteria of FAS, is that there
are numerous physical, neurological and intellectual abnormalities
in individuals with this syndrome. These features unfortunately lead
to a variety of serious secondary cognitive, emotional, behavioural
and developmental problems (Conry, 1993; Huebert & Raftis, 1996;
Shaywitz et al., 1980). These difficulties are consistent,
disabling, and seriously affect their adaptive functioning over
their lifespan.
Fetal Alcohol Effects
It is important to recognize that there is a wide range of
alcohol effects which extend beyond those individuals with FAS, and
which can affect the fetus at many levels of maternal alcohol
consumption. An accumulation of research has indicated evidence of
more subtle forms of FAS which have been termed Fetal Alcohol
Effects (FAE) (Huebert & Raftis, 1996). Fetal Alcohol Effects
are sometimes called partial FAS, Fetal Alcohol Embryopathy or
Alcohol Related Neurodevelopmental Disorder (Conry, 1990; 1993). In
this paper we have adopted the term FAE throughout. Children with
FAE are adversely affected by prenatal alcohol exposure, but they do
not meet the formal criteria of FAS (Mattson et al., 1996). Despite
this lack of diagnostic features, the great majority of researchers
agree that FAE involve those infants or children who meet two, but
not three, of the features formally associated with FAS (Huebert
& Raftis, 1996). Therefore, in addition to receiving alcohol
exposure in utero, such a child may have some partial FAS phenotype,
subtle facial dysphormology, or CNS dysfunction but will not have
sufficient features for a firm diagnosis of FAS or an alternative
diagnosis (Streissguth et al., 1991).
The resulting behavioural, developmental and neurological
problems associated with FAE strongly overlap with those of FAS.
Average IQ ranges in children with FAE are slightly higher and are
more often in normal ranges than in FAS individuals, but many still
have sub-average levels of intelligence (Abkarian, 1992).
Difficulties such as unevenness in academic abilities, learning
disabilities, poor math skills, cognitive deficits, self regulation
difficulties, and behavioural and social impairments are equally
disabling in children with FAE as those with FAS (Donovan, 1992;
Abkarian, 1992; Koditawakku et al., 1995). Unfortunately, cognitive
deficits in those with FAE often go unnoticed or are misinterpreted
for poor motivation (Abkarian, 1992). As Donovan (1992) adds, these
children may actually face more serious problems because their
symptoms are not recognized as FAE. Other research studies
evaluating abilities in both FAE and FAS children indicate the
occurrence of specific deficits of motor speed, grip strength, word
comprehension, visual-motor integration (Mattson et al., 1996,
Conry, 1990), response inhibition, visual-spatial planning,
attention, concentration, and higher level processing (Kopera-Frye,
Dehaene, & Streissguth, 1996). These deficits may be more severe
in children with FAS, but children with FAE do exhibit a variety of
these difficulties, and some to extremely serious degrees (Conry,
1990).
Because FAE are not recognized in a formal diagnosis and is
difficult to identify, it can go unrecognized in most clinical and
research settings, and there is no national data on its incidence.
It is important to realize that despite this lack of recognition,
FAE appears to be more common in individuals with prenatal alcohol
exposure than is FAS (Donovan, 1992), and that these effects are not
necessarily milder forms of FAS because behavioural and functional
impairments associated with FAE have serious, long term consequences
comparable to those of FAS (Huebert & Raftis, 1996). Still, some
researchers discourage the term FAE because it involves such a
subjective and uncertain diagnosis, which can in turn lead to a
variety of problems such as assuming that alcohol is the only cause
of the child’s problem or basing expectations of the child’s
behaviour on FAS (Huebert & Raftis, 1996; Abkarian, 1992). FAE
has none-the-less remained the most common term used by researchers
and clinicians.
Many researchers do advocate the necessity of recognizing the
more subtle and ambiguous effects of FAE, not only because of the
increasing evidence in its favour, but because it is practical to
report areas of concern regardless of whether a definite diagnosis
can be established (Huebert & Raftis, 1996). With research
indicating that alcohol induced abnormalities can occur even in the
presence of normal head circumference and appearance, it seems wise
to extend this analysis to both FAS and FAE.
The presence of FAE as well as FAS suggests a continuum of
alcohol effects. The severity of effects on this continuum depends
on the amount of alcohol consumed by the mother, the stages of
pregnancy during which alcohol is consumed, additional maternal
factors like metabolism, nutrition and genetic make-up, and the
response of the fetus (Conry, 1993;Weiner, Morse & Garrido,
1989). That is, there does seem to be a direct association between
blood alcohol concentration and adverse fetal development where
greater dosages anticipate more severe responses (Weiner et al.,
1989; Streissguth, 1997; Driscoll, Streissguth & Riley, 1990).
This continuum is further supported by substantial evidence of a
spectrum of dose-related effects in numerous animal studies
(Driscoll et al., 1990). Most documented cases of FAS have been born
to women who are heavy or abusive drinkers, and heavier intake of
alcohol has been associated with slower fetal growth in height, head
circumference and increased facial dysphormology (Weiner et al.,
1989; Russell et al., 1991). However, even low dosages have adverse
effects on the fetus in regards to growth, morphology, and CNS
dysfunction (Little et al., 1990).
The threshold of alcohol consumption that produces damage is not
easy to determine. Most measures have thresholds ranging from 7 to
42 drinks per week as measured prior to and during pregnancy
(Jacobson & Jacobson, 1994). Based on consistent findings across
a large number of neurobehavioural studies, some research has
indicated that 4 to 8 drinks per day have been associated with FAS,
where as 2 to 3 drinks per day has been linked with FAE (Little et
al, 1990). Research suggests that the most adverse neurobehavioural
effects occur at levels above 7 drinks per week, thus, 7 drinks
seems to be a common threshold in this respect (Jacobson &
Jacobson, 1994). Still, some neurobehavioural effects have no
threshold and are so sensitive that their effects are observed at
very low levels of exposure (Jacobson & Jacobson, 1994) and
there remains uncertainty as to the lowest dosage at which alcohol
effects have a meaningful impact. Prenatal alcohol exposure for a
single day can be damaging, producing brain growth defects and
neuron loss if high blood alcohol concentration levels are obtained
(West et al., 1990). Drinking before pregnancy has even been linked
to poor fetal development (Little & Wendt, 1991).
Different patterns of drinking are also important for
consideration. For example, individual differences in children with
and without FAS born to women who drink the same amounts of alcohol
may be due to differences in patterns of alcohol consumption.
Although both regular drinking patterns and binge drinking patterns
predict neurobehavioural deficits before and during pregnancy, West
et al. (1990) suggest that a smaller daily dose may be more damaging
than a larger daily dose if it is consumed in an acute binge pattern
that results in higher blood alcohol concentration levels.
Researchers are increasingly adopting the view that there is no safe
level of alcohol consumption during pregnancy (Streissguth et al.,
1991).
In deciding where FAS and FAE fit into the continuum of alcohol
effects, the Institute of Medicine (1996) proposes a five category
system to describe the spectrum of prenatal alcohol effects.
Categories 1 and 2 represent the most severe ends of the continuum
and are indicated by FAS both with or without confirmed maternal
alcohol exposure. Category 3 represents partial FAS involving
prenatal alcohol exposure, evidence of some pattern of
characteristic facial anomalies, and either a) growth retardation,
b) CNS neurodevelopmental difficulties, or c) behavioural/cognitive
abnormalities that are inconsistent with developmental level.
Category 4 is represented by alcohol related birth defects involving
a wide range of congenital abnormalities, and Category 5 is
indicated by FAE which include the criteria of CNS
neurodevelopmental difficulties and behavioural/cognitive
abnormalities from the third category. Other researchers have
suggested similar inclusive categorization systems for FAS with a
range of severity according to a point system (Niccols, 1994).
In summary, FAS does not represent all individuals who are
exposed to alcohol in utero, rather it reflects the severe end of a
continuum of effects from maternal alcohol consumption. Furthermore,
it is important to address the "lower" ends of the continuum because
even small dosages of prenatal alcohol exposure can be debilitating
to fetal development and can cause permanent damage.
Issues in the Diagnosis of Childhood
FAS/FAE
Identification of FAS is most often undertaken by a trained
physician, geneticist or dysmorphologist based on a physical
examination, birth records, history of maternal drinking and
characteristics in growth deficiencies or CNS dysfunction (Abkarian,
1992; Astley & Clarren, 1995). The professional must be
additionally trained to recognize birth defects which distinguish
FAS and FAE from other medical conditions (Conry, 1993). Despite
over two decades of research, diagnosis and identification of FAS
and FAE continue to remain a critical concern for researchers,
medical professionals and society as a whole. Accurate diagnosis is
problematic for a number of reasons, including patient
characteristics, assessment techniques, and sources of bias.
First, with no single feature being uniquely characteristic of
FAS and with this syndrome’s sometimes subtle symptoms, FAS may
closely resemble other malformations like Stickler Syndrome or Lange
Syndrome (Niccols, 1994). Diagnosis becomes even more complex when a
mother’s alcohol intake is not documented as sufficient to produce
physical characteristics commonly observed in FAS (Yellin, 1983).
Central nervous system damage and brain dysfunction can still occur
without facial dysphormology, and yet the absence and subtleness of
facial features in infancy may result in underdiagnosis.
Second, the absence of standardized tools to specifically test
for this syndrome also leads to uncertainty as there is currently no
laboratory test to make any kind of chromosomal diagnosis (Abkarian,
1992). What complicates diagnostic efforts further is the fact that
infancy is a difficult time to recognize FAS and FAE. As an
individual develops over time, the appearance of facial and growth
symptoms may vary with age (Huebert & Raftis, 1996; Conry,
1993). Additional obstacles are difficulties in measuring maternal
alcohol abuse and intake, identifying whether neurobehavioural
abnormalities are due to prenatal exposure to alcohol or to a
postnatal environment, and realizing that diagnostic criteria cannot
easily be applied across different cultures as some facial features
of FAS are common in other cultures such in Afro-American and Native
American communities (Huebert & Raftis, 1996).
A recent Saskatchewan study (Nanson et al., 1995) has indicated
that year of graduation from medical school by family and general
practitioners may be another significant factor in awareness and
diagnosis of FAS. In this study, those doctors who graduated before
1974 (when FAS was first being described in literature) were less
likely to have knowledge of FAS and to ask their patients about
alcohol intake during pregnancy than more recent graduates (Nanson
et al., 1995).
Finally, there are other confounding variables in research and
clinical settings which interfere with diagnosis including
interviewer bias, socioeconomic status, nutritional differences in
samples, substance use other than alcohol use by mothers, and
disagreement of FAS or FAE diagnosis (Little et al., 1990). Until
these challenges are overcome, there are unfortunate and serious
consequences including failure of diagnosis that individuals will
have to endure. For example, one sobering study by Little et al.
(1990) found that despite physical features of FAS being reported in
medical records of 40 infants and a positive history of maternal
drinking during pregnancy in these cases, there was a 100% failure
rate by hospital staff to diagnose FAS. Thus, in addition to a need
for improved assessment techniques, there is a need for increasing
awareness and communication about FAS and FAE.
Despite the relative concern surrounding the issue of diagnosis,
there are some efforts being made to develop more effective
screening tools. Astley and Clarren (1996) have showed that an
accurate phenotypic case definition of FAS can be derived from
photographs that accurately distinguish between those with and
without FAS. These researchers have successfully used photo analysis
in which sensitivity of identification is unchanged by race, gender
or age, and which appears to have serious potential as a diagnostic
tool (Astley & Clarren, 1996). They suggest that no two
individuals with FAS have identical facial features but they all
have an overall gestalt, thus, a multivariate approach can be used
to identify the minimum number and magnitude of features that most
accurately distinguish FAS individuals from non FAS individuals
(Astley & Clarren, 1996). The authors point to advantages of
using this type of photo analysis approach with facial features
specific to FAS in that photo analysis is inexpensive, expert
photographers are not required, photographs can be transferred
electronically to maximize consistency in interpretation,
photographs can be stored and analysed anonymously, and individuals
can be targeted for intervention. If this screening tool continues
to be demonstrated as a sensitive, accurate, reliable and precise
instrument through further testing of its validation, it may greatly
improve current problematic diagnosis situations. However, it is not
clear if this technique will prove useful in identifying FAE.
Ideally, FAS and FAE require thorough multi-method assessment
involving family interviews, professional interviews and reports,
observations of the child, information on the child’s developmental
history, assessment of the child’s intellectual, perceptual speech
and language abilities, as well as information on social behaviour,
psychopathology and mental retardation (Yellin, 1983). Clearly there
is much work to be accomplished before assessment of this calibre
can be reached. The possibility of identifying individuals who may
have FAS/FAE in the criminal justice system will be discussed later
in this paper.
Incidence and Prevalence of FAS/FAE
Patterns in diagnosis of FAS and FAE unfortunately contribute to
impediments in determining the incidence and prevalence statistics
of these syndromes. Many estimates are dependent on definitions and
criteria of FAS (Abel & Sokol, 1991), thus, the estimates that
do exist, whether they are world, North American or Native community
statistics, are likely to be conservative (Abel & Sokol
1991).
The present estimate of the world wide incidence of FAS is 1.9
cases per 1000 (Abel, 1990). Similarly, the American incidence of
FAS is estimated to be between 1-2 cases per 1000 (Nanson et al.,
1995). There is no national data for Canadian estimates of FAS,
although tens of thousands of adults are estimated to have the
syndrome ("FAS: From Awareness to Prevention," 1992; Donovan, 1992).
For women who have already had one child with FAS, their risk of
reoccurrence is very high with an incidence estimate of 771 out of
1000 (Huebert & Raftis, 1996). The first report in Canada of the
incidence of FAS for an entire province was conducted in
Saskatchewan and published in 1996 (Habbick et al., 1996). All cases
who were born in Saskatchewan prior to January 1st, 1993 were
studied. In total, 207 cases of FAS were identified in this study
with 86% of these cases consisting of Aboriginals (Habbick et al.,
1996). The authors additionally concluded that due to the likelihood
of under-diagnosed cases throughout the province that their
incidence statistics were underestimated. Virtually all studies of
epidemiology have concluded that FAE have an incidence of 3 to 4
times higher than FAS (Donovan, 1992; Habbick et al., 1996).
However, because FAE are less likely to be consistently diagnosed or
to be observed by a health care professional, they continue to be
undetected.
Aboriginal Populations
An accumulation of research has indicated that the incidence of
FAS differs across Canada and the United States with some areas
having much higher rates than others. These differences seem to lie
within different Native cultural groups whose incidence of FAS/FAE
has been documented to be as much as ten times higher than general
population estimates (Abkarian, 1992). In the USA, FAS appears to be
highest among American Indians in the Southwest. May et al. (1983)
studied and screened all FAS suspects in Navajo, Pueblo and Plains
(Apache and Ute) tribes who resided in 26 reservations consisting of
a population of 240,000 people. The overall FAS incidence among
these tribes were 6.1 cases per 1000 (May et al., 1983). This study
also reported that among 22, 963 American Indians in seven
communities in New Mexico, Arizona, and South Colorado that 300
cases of FAS and FAE were found, but that the prevalence was highly
variable among the three different cultural groups. That is, in the
Navajo communities the prevalence was 1.6 cases per 1000, for the
Pueblos it was 2.2 cases per 1000, and for the Southwest Plains the
incidence was 10.7 cases per 1000. This latter group had higher
rates of abusive drinking than the others and mothers had lower
social adjustment, high risk lifestyles and a higher mean age of
birth (May et al., 1983).
FAS among Native populations in Canada is also a concern. Bray
and Anderson’s (1989) review of the epidemiology of FAS among
Canadian Native peoples illustrates high incidence rates through
several studies. Sandor et al.’s (1981) study of 76 patients (69 of
which were Native ancestry) in the Yukon territory and British
Columbia indicated a 10.9 to 1 ratio of Natives with FAS to
Caucasians. Asante et al. (1985; as cited by Bray and Anderson,
1989) who looked at 586 subjects in 36 Native communities in Yukon
Territory and British Columbia found that the prevalence of FAS and
FAE combined was 46 cases out of 1000 in the Yukon, and 25 cases of
1000 in British Columbia, and that prevalence rates for non Natives
in this area were 0.4 cases per 1000 (Bray and Anderson, 1989). The
highest reported prevalence was reported by Robinson, Armstrong,
Moczuk, and Loock (1992) who studied 116 Native people from a
British Columbia Indian reserve. The prevalence among Natives in
this village was 190 cases per 1000 (Robinson et al., 1992). In
addition to these high rates of FAS reported here, Burd and Moffat’s
(1994) review of FAS in North American Indians and Canadian
Aboriginals also points to high prevalence and incidence rates in
Alaska (2.7 per 1000 cases), Northern British Columbia (10.3 per
1000 cases ), North Dakota (3.1 cases per 1000) and South Dakota
(3.9 per 1000 cases). These authors note that among the ten studies
they reviewed (including those reviewed by Bray and Anderson, 1989)
consistent FAS criteria were used to determine CNS dysfunction,
growth impairment, facial features and maternal alcohol consumption
during pregnancy (Burd & Moffat, 1994). They also point out that
the high prevalence observed may actually underestimate FAS in these
populations as none of the ten studies examined all children in
these populations who may have had FAS.
As North American Natives constitute culturally diverse groups,
it is difficult to classify them together even though many appear to
have much higher rates of FAS/FAE than found anywhere else. For
example, within Native subcultures there are substantial differences
among cultural tribes in social, geographical and economic
circumstances and in cultural attitudes toward drinking (Aase,
1981). May et al., (1983) indicated that in Pueblo and Navajo tribes
(where the incidence of FAS was much lower) there was much tighter
control of alcohol use and more ostracism for women who drank, where
as Plains’ tribes (which had much higher frequencies of FAS) were
more permissive of alcohol-abusive behaviour. The authors concluded
that risk of FAS was better correlated with drinking styles of each
cultural group than overall alcohol consumption levels (May et al.,
1983).
Native subcultures also tend to have young populations where
child bearing begins earlier and ends later (May, 1991). Bray and
Anderson (1989) further note that in addition to cultural attitudes
to alcohol, styles of drinking, and longer child bearing span,
Native communities often lack rehabilitation programs for women
which may compound high rates of FAS. Robinson et al. (1992) also
investigated whether lack of knowledge of FAS among Native peoples
may be another contributing risk factor. They interviewed 123
Canadian Aboriginals in Victoria and Vancouver and observed that
virtually all women (96%) were aware of the danger of maternal
drinking during pregnancy, that most women (85%) believed that there
was no safe amount of drinking during pregnancy, and that 40% of
women knew someone with FAS (Robinson et al., 1992). However, though
the majority had heard of FAS, gaps existed in their knowledge of
its causation, characteristics, and implications.
There is much to learn about which factors are specifically
responsible for placing Native women at risk for producing FAS/FAE
children. As Bray and Anderson (1989) note, the lack of published
research in Canada on the incidence of FAS/FAE in both Native and
non Native populations make it difficult to compare these groups or
to draw confident conclusions. Also, comparisons are further
complicated because non Native studies have been conducted in
clinical and urban settings where as Natives have been studied in
small communities and reservations (May, 1991). Despite these
inconsistencies between studies, there does appear to be greater
problems of FAS for certain Native populations.
Estimated Cost of FAS
American estimates of financial costs of FAS have been tabulated,
although no such Canadian estimates exist. Abel and Sokol (1991)
conservatively estimate that the annual cost of FAS in the USA is
74.6 million dollars, 78% of which is accounted for by costs related
to mental retardation and low birth weight. Streissguth et al.
(1991) who also consider their estimate to be conservative, predict
that financial costs of FAS patients to 21 years of age require 321
million dollars per year in the USA, and 1.4 million dollars across
the life span of one child with FAS. Both of these estimates take
into consideration costs for prenatal and postnatal growth
retardation and mental retardation. Total annual costs should
ideally account for select problems related to FAS such as low birth
weight, neural deficits, cleft palate, heart deficits, and auditory
deficits (Abel, 1990). Not surprisingly, FAS related mental
retardation accounts for higher residential costs than does Cerebral
Palsy or Down Syndrome, and may account for one fifth of costs of
all institutionalized mentally retarded patients in the USA (Abel,
1990).
As Abel (1990) importantly notes, these estimates are based on
the economic impact of FAS which represents only an extreme in the
continuum of abnormalities related to prenatal alcohol exposure.
Financial costs to society are undoubtedly much higher when FAE and
high risk Native communities are taken into consideration.
Maternal Risk Factors
It is important to remember that not all children born to alcohol
consuming mothers have FAS and that the effects of alcohol range
from an absence of any effect to fetal death. As previously
discussed, severity of alcohol exposure depends on the amount of
maternal alcohol consumption, the stages during pregnancy when
consumption occurs, and patterns of drinking (Niccols, 1994). Risk
also seems to be heightened by aboriginal status and in women with
low socioeconomic status, who use multiple drugs, who have more than
one child and who have short intervals between the births of their
children (Niccols, 1994; Abel, 1990).
There are additional factors that place some women at higher risk
for having a child with FAS. Maternal health and nutrition are
factors which are important to consider. For example, mothers of FAS
children tend to have more alcohol-related disorders such as
cirrhosis, anaemia, amino acid deficiencies and increased
psychiatric hospitalizations (Abel, 1990). Paternal influence is
often ignored in research literature, but studies which have
mentioned fathers of FAS children have indicated that many are
alcoholic and that paternal drinking is related to a small but
significant decrease in infant birth weight (Abel, 1990). There is
also a lack of research on genetic susceptibility, but reports of
fraternal twins who do experience the same effects from alcohol
exposure suggest that genetic variables may also be related to FAS
(Abel, 1990).
May (1991) notes that women with drinking problems are often in
situations of low social integration involving difficulties of
unemployment, separation or divorce, and partners with drinking
problems. Abel (1990) similarly concludes that women at risk of
having FAS children appear to have a history of spontaneous
abortions, a low pregnancy weight, poor health, low socioeconomic
status, close contact with men who are heavy drinkers, and who are
multiparous. Recognizing that there are a variety of maternal risk
factors beyond direct alcohol consumption and patterns of drinking
by mothers is important for both researchers and health care
professionals in attempting to identify high risk groups of women.
Although these risk factors are more situational and social in
nature, they are still related to fetal outcome and may continue to
contribute to poor maladjustment of children with FAS when they are
born.
In summary, Fetal Alcohol Syndrome is a complex and
multi-determined problem which presents a number of challenges to
researchers, to medical professionals, and to society as a whole.
Although many questions pertaining to FAS and FAE are being answered
through the continuous accumulation of research that is taking place
both in North America and in Europe, there remain substantial gaps
in current knowledge of FAS and related issues. Future efforts must
aim to clarify ambiguous terminology, criteria, and diagnosis of FAS
and FAE and must attempt to establish more objective and reliable
diagnostic measures and assessment techniques. Additional research
is also needed to address the current inadequate knowledge of the
prevalence and incidence rates of FAS and FAE in Canada. Finally,
there is a necessity for more data on alcohol consumption patterns
and drinking styles of Canadian Aboriginal women of child bearing
age to be clearly identified and to become a priority for
researchers and clinicians. These challenges are not easy ones to
overcome, but it is crucial to seriously confront these issues if
there is to be an advancement in attaining a more complete,
comprehensive and accurate understanding of Fetal Alcohol Syndrome
and Fetal Alcohol Effects.
PART 2: COURSE AND CONSEQUENCES
While children with FAS often display a physical phenotype which
signifies their alcohol related deficits, once they grow older it is
harder to identify them based purely on facial features. This is
especially true of FAE. More specifically, changes in nose and
mandible alter the overall facial phenotype (Streissguth, Clarren
& Jones, 1985). There appears to be a behavioural phenotype
which results from the central nervous system (CNS) effects of
prenatal alcohol exposure. Abkarian (1992) asserts that FAS presents
a behavioural phenotype as robust as physical characteristics in
marking FAS. This phenotype designates people with FAS/FAE from
childhood to adulthood but not all items apply to every person
(Streissguth, 1997). It appears that "the behavioural manifestation
of fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE) vary
with age" (Nanson & Hiscock, 1990, p. 656). This section
outlines the characteristics of the behavioural phenotype in
infancy, preschoolers, school-aged children, adolescents and
adulthood. Following Streissguth's (1997) distinction, the problems
are also categorized into primary and secondary disabilities.
Primary disabilities are the result of brain damage caused by
prenatal alcohol exposure. Secondary disabilities are possible
consequences of primary disabilities and often surface as people
with FAS/FAE mature. Among these consequences are delinquency and
crime. A connection between FAS/FAE, attention deficit disorder with
and without hyperactivity, conduct disorder and delinquency is
suggested. Thus, although longitudinal data extending into adulthood
are just starting to become available, consideration of the
consequences of FAS/FAE points to the fact that it will clearly
impact on the criminal justice system.
Infancy
During the first week of life infants may show excessive arousal,
disturbed sleep patterns, gastrointestinal symptoms, hyperactive
reflexes and other signs typical of withdrawal from a CNS depressant
like alcohol. When FAS is identified in infancy there are a number
of characteristic problems associated with fetal alcohol exposure
including failure to thrive, delays in development, motor
dysfunction and cardiac problems. Newborns also have regulatory
problems and delays in acquisition of skills (Abkarian, 1992;
Huebert & Raftis, 1996; Stratton, Howe & Battaglia, 1996).
Many researchers have found that infants with FAS exhibited
tremulousness, irritability, hyperacusis (low hearing threshold),
disrupted sleep/wake cycles, weak suckle and feeding difficulties
(Streissguth, 1997; Nanson & Hiscock,1990; Niccols,1994). Poor
habituation is one of the earliest and strongest manifestations of
CNS dysfunction associated with prenatal alcohol exposure.
Habituation is an early sign of focussed attention, which enables
the infant to avoid wasting energy on inconsequential aspects of
their environment that are not directly related to their needs. The
more alcohol reportedly consumed by the mother, the more poorly
newborn infants habituated to light, rattle and a bell (Streissguth,
Barr & Sampson, 1990). Streissguth et al. (1990) also found
strong alcohol related attention effects on day one of life. Olson,
Sampson, Barr, Streissguth & Bookstein (1992) confirmed similar
findings in infants, as well as neonatal tremors along with
significantly lower mental and motor development at eight months.
The main primary problems that are evident at this age are
irritability, jitteriness, tremors, weak sucking response, problems
with sleeping and eating, failure to thrive, delayed development,
poor motor control and poor habituation.
Preschool Years
The preschool period is commonly defined as from 2 ½ to 6 years
of age. Cognitive deficits are frequently observed and attention
deficit disorder with and without hyperactivity is often identified.
Preschoolers with FAS exhibit hyperactivity, friendliness and
fearlessness, language dysfunction, perceptual problems and
behavioural disturbances. During the preschool period, hyperactivity
is present in 85% of children with FAS (Niccols, 1994; Stratton et
al., 1996). Streissguth (1997) comments that some children with
FAS/FAE are already out of control as preschoolers. They may show
violent behaviour, fire-setting, marked hyperactivity and
incorrigibility. Furthermore, they often display language delays,
motor impairments, significant developmental delays and unusual
sexual behaviour. A common occurrence is problems with attention,
impulsivity, distraction and memory (Abkarian, 1992). These are all
indicators for professional intervention. Huebert and Raftis (1996)
concur with the previous findings and report that at four years of
age, children exposed to alcohol prenatally have lower IQ, longer
reaction time and other impaired behaviour.
Maternal alcohol consumption during pregnancy, even in "social"
amounts, is associated with inattention and restless behaviour.
Nanson and Hiscock (1990) found that "preschool children of social
drinkers appear to display behaviour similar to preschoolers who go
on to be diagnosed as having attention deficit disorder (ADD)" (p.
656). This suggests that children diagnosed with attention deficit
disorder may include a number of children whose cognitive impairment
developed from exposure during pregnancy to social amounts of
alcohol. In a comparison of children with FAS/FAE and attention
deficit disorder, it was discovered that "FAS/FAE and ADD children,
regardless of their intellectual abilities, were considered by their
parents to be hyperactivity and inattentive in comparison to the
parental judgement of normal children" (p. 658). However, it was
also determined that on a laboratory measure of attention, children
with FAS/FAE experienced more difficulty than did children with
attention deficit disorder. More specifically, FAS/FAE children had
difficulty with investment, organization and maintenance of
attention over time, modulation of arousal to meet situational
demands and with the inhibition of impulsive responses. The primary
disabilities that appear to be manifest at this age are
hyperactivity, attention problems, perceptual difficulties, language
problems and poor motor coordination.
School-Age Years
The school age covers from 6 years old until 13 years of age.
FAS/FAE children are described as unable to sit still in class and
pay attention to school work. They have trouble dealing with
multiple sensory inputs and significant problems in peer
relationships. Furthermore, "beginning at school age, children have
also been reported to "lack remorse," to fail to learn from
mistakes, to lack judgement, to be unusually aggressive, and to be
unable to maintain friendships" (Stratton et al., 1996, p. 163).
Repeated failure, peer pressure and baiting, inability to understand
the demands of tasks and insufficient time to complete tasks can add
to a vulnerable child's loss of control. Streissguth (1997) asserts
that "the basic cognitive, attention, and memory problems of
children, adolescents, and adults with FAS/FAE set the stage for
behavior problems in the classroom and at home because of repeated
failure to meet expectations" (p. 135). School-aged children with
FAS/FAE have basic communication difficulties and trouble with
self-reflection that makes verbal communication of their needs
problematic. As well, they become overwhelmed by stimulation and
unable to either respond appropriately or protect themselves from
overstimulation of competing and ambiguous demands. They often have
problems with number processing and abstract thinking.
Attention deficits. Many researchers have
found that children diagnosed as FAS/FAE and those classified with
attention deficit disorder with and without hyperactivity exhibit
similar attentional deficits and behavioural problems (Huebert &
Raftis, 1996; Kodituwakku, Handmaker, Cutler, Weathersby &
Handmaker, 1995; Nanson & Hiscock, 1990; Niccols, 1994; Olson,
Sampson, Barr, Streissguth & Bookstein, 1992; Shaywitz, Cohen
& Shaywitz, 1980). It is important to note that the majority of
these studies controlled for possible confounding cofactors such as
maternal age, race, quality of child care environment, other drug
use, smoking and parental education. O'Malley (1994) states that
"the prenatal exposure to alcohol creates in some children an FAE
picture which manifests itself in behavioral problems consistent
with attention-deficit-hyperactivity-disorder (ADHD) and comorbid
conduct disorder, explosive variety, or ADHD with comorbid mood
disorder" (p. 1060). LaDue et al. (1992) assert that many of their
patients with FAS/FAE "fit the diagnostic criteria for attention
deficit disorder with hyperactivity and for conduct disorders" (p.
128). Decrements in attention and in speed of central processing
have been predicted by moderate prenatal alcohol exposure across the
life span of these offspring up through the age of their last
evaluation. Four types of learning problems were associated with
moderate alcohol exposure in utero. Performance on arithmetic and
reading tests as well as teacher ratings of classroom behaviour
indicated these children were at increased risk for learning
disabilities, parent ratings of behaviour denotative of learning
problems, parent ratings of below average academic performance and
placement in remedial classes and programs at school: "The
implication that these learning problems stem in part from
intrinsic, organic, attentional deficits can be drawn from the fact
that alcohol-related decrements have been observable throughout the
lifespan of these children, long before academic learning had
occurred" (Streissguth, Barr & Sampson, 1990, p. 668).
Hyperactivity. Another behavioural phenotype
that surfaces during the school years is hyperactivity. Sphor and
Steinhausen (1987) assert that "hyperactivity is one of the cardinal
symptoms of the syndrome and generally has a poor prognosis" (p.
17). Persisting hyperactivity and distractibility could be a
significant contributor to poor educational performance. Shaywtiz,
Cohen and Shaywitz (1980) discovered that hyperactivity was
described in all but one of 15 children's (age 6.5-18.5 years old)
school records.
Learning problems. Olson et al. (1992)
followed a large cohort (n=462) of children from birth to age 11.
They found that at age seven, arithmetic and spatial organization
were affected, and that alcohol-related difficulties emerged in
parental reports of learning disabilities and teacher reports of
processing and organizational problems as well as memory
difficulties. At age 11, alcohol-related effects emerged in teacher
reports of signs of distractibility, restlessness, and lack of
persistence as well as continuing reports of processing and
reasoning problems. In this study, deficits at age 11 appeared
dose-dependent, with increasing deficits in child performance
associated with increasing maternal alcohol use. A further finding
was that episodic binge drinking was related more to detrimental
child classroom behaviour at 11 years than a measure of overall
volume of alcohol consumption.
Information processing deficits. Huebert and
Raftis (1996) comment that school-aged children with FAS may have
severe information processing deficits, which results in problems
with information input, integration, memory and output. In the
classroom, information processing difficulties may be demonstrated
by a child who: 1) appears to know something one day, forgets it the
next, and then knows it again after several more days, 2) repeats
exactly what they were asked to do, but still does not complete the
task, 3) has trouble doing anything that involves arranging,
sequencing, or taking turns, 4) repeats words, questions, or actions
over and over. A potential problem is that cognitive deficits often
go unnoticed in children with FAE or are mistaken for poor
motivation.
Memory impairments. Further evidence for
cognitive deficits in children with FAS comes from studies which
have found that children with FAS have deficits in spatial memory,
working memory, and language. Kodituwakku et al. (1995) discovered
that 13-year-olds showed more difficulty than controls with planning
and the manipulation of information in working memory. They propose
the dysfunction in the ability to hold and manipulate information
and to manage goals in working memory as the underlying cognitive
mechanism responsible for impairments in self-regulation. Conry
(1990) evaluated a group of 17 Native American children, aged 5-16,
with FAS or FAE. He discovered that these children showed deficits
on specific abilities such as motor speed, grip strength,
visual-motor integration and word comprehension. Children with FAS
also demonstrated weaknesses in verbal learning and memory. More
specifically, they had trouble with both immediate and delayed
recall. The locus of memory impairment in the FAS group may be at
the encoding level rather than at the retrieval level. It is
relevant to note that "this encoding deficit may be alternatively
related to attentional or impulsivity factors" (p. 814). Kodituwakku
et al. (1995) endorse this viewpoint in stating that "attentional
problems...typically have detrimental effects on other cognitive
functions, especially memory" (p. 1558). Many, although not all, of
the learning and memory deficits may be related to a global
intellectual decline. West, Goodlett and Brandt (1990) assert that
"the hallmark of CNS dysfunction accompanying FAS is intellectual
deficiency" (p. 687). In light of this evidence, it may be useful
for educators to understand that individuals with FAS/FAE may
require additional assistance in learning but will be able to hold
information once it is learned. It is important to keep in mind that
the small sample size may limit the generalizability of these
findings.
Communication difficulties. It appears that
nearly every study on people with FAS or FAE reports a general
discrepancy between the subject's ability to use verbal language and
their ability to communicate effectively. Communication disorders
often go unnoticed because of the small stature of children with
FAS. Often, observers assume children to be younger than their
chronological age. Children with FAS have reasonable social speech
but they tend to ignore messages they receive. Because of their
superficial conversational talent, adults may wrongly assume that
children with FAS have stronger linguistic skills than they actually
do. Children with FAS/FAE also show a range of maladaptive social
behaviours inconsistent with their chronological and mental age that
interferes with their establishment of friends, and can lead to
social isolation. As academic demands increase, teachers often
report problems in staying on task, constant need for monitoring,
tendency to distract classmates, negative social attitudes and
stubbornness. Generally, children with FAS/FAE are described as
intrusive, loquacious, and over-inquisitive, whereas they show a
marked discrepancy between high verbal and ineffective communication
skills. The combination of primary disabilities such as
hyperactivity, attention deficits, learning disabilities, arithmetic
difficulties, cognitive deficits, language problems and poor impulse
control makes school-aged FAS/FAE children very susceptible to
academic failure and future behavior problems.
Adolescence and Adulthood
Adolescents with FAS/FAE are thought to have significant deficits
in intelligence, learning, academic achievement and social
behaviour. These youth are at a much greater risk for substance
abuse than others of this age group. Other characteristics involve
persistent developmental and psychiatric problems (Stratton et al.,
1996). Huebert and Raftis (1996) emphasize that "behavioural and
psychopathological problems, which appear to increase in
adolescence, are viewed by many as the most debilitating conditions
afflicting these individuals" (p. 3). The majority of teenagers with
FAS/FAE face increased failure and less satisfaction in academic
classes, more social isolation, low self-esteem and depression. One
concern is that the peer group they attract may be unpredictable and
a source of deviant behaviour, such as use of alcohol and drugs,
out-of-control sexual activity, as well as violence and vandalism.
It is common for adolescents with FAS/FAE to engage in inappropriate
sexual advances that leave them open to victimization, rejection and
prosecution (Streissguth, 1997). Abkarian (1992) agrees and contends
that maladaptive behaviours persist in adolescence and adulthood,
and naivete is coupled with sexual curiosity and lack of socially
appropriate sexual behavior.
Primary Disabilities. Deficits subsumed under
this category are those that the individual was born with and are
directly due to prenatal alcohol exposure. Streissguth, Sampson,
Olson, Bookstein, Barr, Scott, Feldman and Mirsky (1994) looked at
attention and short-term memory in 14-year-olds, using close to 500
subjects from the Seattle Longitudinal Study on Alcohol and
Pregnancy. They found that "prenatal alcohol exposure continues to
affect the neurobehavioral functioning of young adolescents as it
did in laboratory assessment at four years, and seven years and in
an assessment of classroom behavior at 11 years" (p. 212). Tasks
requiring more complex decision-making were the most sensitive in
discerning the long-term effects of prenatal alcohol exposure. This
study documents alcohol-related deficits in spatial memory,
attentional processes and inhibitory problems. On the National
Institute of Mental Health Attention Battery, the focus and sustain
components of attention were most strongly connected to prenatal
alcohol exposure. In summary, "the early adolescent consequences of
prenatal alcohol involve response inhibition difficulties in complex
problem-solving, poorer learning from experience in short-term
recall of complex information, and fluctuating attentional states"
(p. 214).
These results show a dose-response relationship where the
likelihood of poor performance on attention/memory tasks clearly
increases with increased prenatal alcohol exposure.
A number of researchers contend that other problems experienced
in adolescence and adulthood are impulsivity, poor judgement,
social-relationship problems, emotional problems, difficulty with
organizational skills, difficulty in recognizing and setting
boundaries, communication problems and abnormally increased and
uncontrollable muscle movement (Huebert & Raftis, 1996;
Kodituwakku, Handmaker, Cutler, Weathersby & Handmaker,1995;
LaDue et al.,1992).
Adaptive Functioning. Streissguth et al.
(1992) did a study of adaptive functioning of 61 adolescents and
adults with FAS/FAE. The Vineland Adaptive Behaviour Scales, which
measures daily living, socialization and community skills, were
administered to the caregivers of the subjects. The results
suggested that patients performed most poorly on socialization
skills and best on daily living skills. The Vineland Adaptive
Behaviour Scales showed that failure to consider consequences of
action, lack of appropriate initiative, unresponsiveness to subtle
social cues, and lack of reciprocal friendships were problems that
were common to patients with FAS/FAE who were technically not
mentally handicapped according to IQ scores. It appears that "the
most frequent types of maladaptive behaviors noted were poor
concentration and attention, dependency, stubbornness or sullenness,
social withdrawal, teasing or bullying, crying or laughing too
easily, impulsivity, and periods of high anxiety. In addition, many
of the patients were noted to lie, cheat, or steal, to show a lack
of consideration and to exhibit excessive unhappiness" (p. 1965).
Overall, significant psychosocial problems and life-long adjustment
difficulties were characteristic of most of these patients. Average
academic functioning of these adolescents and adults was at the
early grade school level. A particular deficit in arithmetic skills
was observed, which reflected their extreme trouble with
abstractions and generalizing from one situation to another.
Furthermore, "attentional deficits and problems with judgement,
comprehension, and abstraction were the most frequently reported
behavior problems...Conduct problems, such as lying and defiance,
also characterized a number of these patients (62%)" (p. 1966).
Recent longitudinal studies of FAS patients have discovered that
conduct disorders persisted in 20% of these adolescents
(Streissguth, 1997).
LaDue et al. (1992) studied 92 patients with FAS/FAE, with a mean
age of 18.4. They had the subject's caretakers fill out the Vineland
Adaptive Behaviour Scales as well as the Symptom Checklist. The
Symptom Checklist was developed by LaDue et al. (1992) to examine
psychosocial functioning (see Appendix A). In general, they found
that abstracting and memory deficits were displayed in many areas,
affecting not only academic performance but also daily living
skills. IQ was not an accurate predictor of daily living skills for
these patients as those with higher IQ functioned just as poorly as
those with lower IQ. Patients did not function at a level that
allowed independent living or self-sufficiency. The level of
maladaptive behaviour was very high (58%). The findings indicate
that "the symptoms most characteristic of adolescents and adults
with FAS/FAE were attentional deficits (80%), memory problems (73%)
and hyperactivity (72%)" (p. 115). Sexually inappropriate behaviour
with others was reported for 31% of the patients. The male patients
were more likely than the females to be involved in sexually
inappropriate behaviour (38% vs.18%).
Secondary disabilities. In this category are
disabilities that arise out of the interaction of the individual’s
primary disabilities and life experience. It is assumed that
secondary disabilities can be prevented, reduced or eliminated with
proper intervention. The problems of childhood and adolescence
manifest themselves in a variety of ways in adulthood. Money
management is a major difficulty and they often act impulsively and
without consideration of consequences. They also remain
extra-sensitive to sensory stimulation throughout their lives. LaDue
et al. (1992) observe that as individuals with FAS/FAE get older,
hyperactivity which is common in childhood, evolves into problems of
easy distractibility, inability to attend to relevant data and
inability to ignore irrelevant information. Adults with FAS/FAE may
violate personal space conventions and use inappropriate and
ineffective methods of trying to establish relationships. They may
misperceive the intentions of others and are easily victimized.
LaDue et al.'s (1992) study on adaptive functioning also examined
secondary disabilities. They comment that "the incidence of sexual
misconduct leading to legal problems was higher in this population
than might have been anticipated, with 13% of our patients being
charged with some type of violation. Again, males (20%) were far
more likely to have such complaints lodged against them than were
females (4%)" (p. 116). The majority of the patients had truancy
problems (53%), and this rate was almost equal for both sexes. As
well, 25% reported past or current problems with drug abuse and 36%
of the patients acknowledged alcohol abuse. There were no
substantial gender differences in terms of drug use, but males
abused alcohol at a higher rate than females. Furthermore, there
seemed to be quite a large number of patients involved in criminal
behaviours or problems with the law. The authors emphasize that
"socially inappropriate behavior has sometimes led to legal problems
among outpatients with FAS/FAE The rate for petty larceny was 28%,
and that for grand larceny was 4%" (p. 116-117). Other results
indicated that: 27% of the patients had been involved in destruction
of property, the drunk driving rate was high (23%), there was a high
percentage of problems with lying (57%), stealing was observed in
35% of the patients and 46% of the patients had problems with
defiance of authority.
Considering psychiatric illnesses, depression is the most common
mental health problem, characterizing more than 40% of adults with
FAS/FAE. Furthermore, 40% of adults and adolescents have made
suicide threats and almost 25% have made suicide attempts
(Streissguth, 1997). Stratton et al.(1996) emphasize that "the
prognosis is poor and includes a higher risk for substance abuse,
criminal behaviour, deteriorating mental health, and similar
problems" (p. 166). The outcome for both FAS and FAE adults is
disturbing. Streissguth (1988) compared the long-term outcome of 58
young adults with FAS to 34 young adults with FAE. Although the
adults with FAS were significantly more impaired intellectually,
there were no differences between the two groups in terms of their
poor academic or social functioning. The mean IQ was 15 points lower
for patients with FAS versus those with FAE. Therefore, "the
long-term social consequences of FAE may be as severe as those of
FAS" (p. 656).
An important 4-year study on secondary disabilities (Streissguth,
Barr, Kogan, & Bookstein, 1997) provides more empirical evidence
suggesting that the population of individuals with FAS and FAE are
at heightened risk for involvement with the criminal justice system.
Streissguth et al. collected information from 253 adolescents and
adults age 12 - 51 with FAS (33%) or FAE (67%). A life history
structured interview was given to the primary caregiver of the
afflicted individual to measure six secondary disabilities. The
results showed that secondary disabilities were abundant. More than
95% had mental health problems (most frequently depression), more
than 60% had a disrupted school experience (most frequently
suspensions and then drop-outs), 35% had alcohol and other drug
problems, and 49% had displayed inappropriate sexual behavior (most
frequently sexual advances, then sexual touching, and promiscuity)
. Sixty percent had been in trouble with the law, which was
defined as ever being charged, convicted, or in trouble with the
authorities for any of a list of criminal behaviors. Fifty percent
had been incarcerated. Adolescents and adults were more likely to
have been incarcerated than to have been in an inpatient mental
health or alcohol and other drug treatment program. Thirty-two
percent of adolescents and 42% of adults had been incarcerated for a
crime, whereas 20% and 28% of adolescents and adults, respectively,
had received inpatient treatment for a mental health problem and 12%
and 20% of adolescents and adults, respectively had received
inpatient alcohol and other drug treatments.
The extent of these behavior problems appears to be particularly
associated with FAS/FAE and not to mental retardation in general
(Streissguth, 1997). For example, criminality is not a typical
behavior profile for people with Down's syndrome. One study
comparing these two groups found that only 15-32% of adolescents
with Down's syndrome had severe behavior problems, whereas 62% of
those with FAS or FAE had significantly maladaptive behaviors
(Harris, as cited in Streissguth & Randels, 1988). The
maladaptive behaviors of individuals with FAS and FAE are clearly
much greater than those of individuals with Down's syndrome.
Despite the high rates of criminality among people with FAS/FAE,
it is important to note that their criminal activity appears largely
impulsive rather than premeditated. (Streissguth, 1997). Streissguth
(1997) suggests that their maladaptive behaviors (e.g., impulsivity,
attention problems) and cognitive deficits (e.g., difficulty sorting
out cause and effect, trouble understanding consequences) lead them
into trouble with the law. Streissguth (1997) found that individuals
with FAS/FAE with disrupted school experiences were over twice as
likely to get into trouble with the law. The maladaptive behaviors
of people with FAS/FAE are compounded by their problems with
substance abuse, and become an increasing concern as they approach
adolescence and have more time on their hands due to unstructured
days resulting from disrupted schooling and unemployment
(Streissguth, 1997).
The most frequent crime reported in this study was theft &
shoplifting (Streissguth, Barr, Kogan, & Bookstein, 1997).
However the researchers note that the whole gamut of criminal
activity was represented to some extent. The most common sentencing
alternatives were probation (46%) and community services (39%), and
the most prevalent types of sentencing were juvenile justice (more
than 60%) and juvenile detention (more than 40%).
Among the 253 people sampled in this study, higher rates of
secondary disabilities were found among those who had FAE rather
than FAS, behaviors more typical of the behavioral phenotype of
fetal alcohol behaviors, and IQ scores above 70 rather than below.
There are many implications of these findings for the lives of
adolescents and adults with FAS/FAE. Often, these patients have
difficulty communicating their needs, being self-sufficient,
maintaining their own hygiene, relating to their age mates
appropriately, and applying for and receiving social services. They
are also easily led and manipulated by others and at risk for
social, sexual and financial exploitation. Streissguth & Randels
(1988) claim that "a goal of independent living is difficult to
envision, considering this level of adaptive functioning" (p. 147).
A major concern for caretakers of female patients is elevated risk
of sexual abuse and/or pregnancy. Many of the higher functioning
patients (IQ>80) are painfully aware of their deficits, to the
point of understanding that they were caused by their mother's
drinking during pregnancy. Researchers see a high level of
depression, anger, suicidal ideation, antisocial behaviour and drug
and alcohol use among these patients. Streissguth and Randels (1988)
found similar results among their eight patients diagnosed with FAS
whom they followed into adulthood. Surprisingly, the adults with the
highest IQ were having the greatest trouble with life adjustment,
and had the largest number of psychosocial problems. It is clear
that the behavioural and social problems so often described in
younger patients with FAS/FAE do not disappear, and new difficulties
arise with physical maturation.
Risk and Protective Factors
There appears to be a number of risk and protective factors that
can work to either buffer or exacerbate the effects of FAS/FAE.
These factors can be linked with either a high or low level of what
Streissguth (1997) terms "secondary disabilities". Secondary
disabilities include disrupted school experiences, problems with
alcohol and drugs, mental health problems, victimization, and
trouble with the law. Streissguth (1997) has now extended her
research to a four year study on secondary disabilities which
involved 415 individuals (6-51 years old) with FAS (33%) or FAE
(67%). She administered the Fetal Alcohol Behavior Scale (FABS),
which reflects the behavioural phenotype of typical fetal alcohol
behaviours, to the caregivers of the subjects. She found that the
main protective factors were: 1) living in a stable and nurturing
home of good quality, 2) not having frequent changes of household,
3) not being a victim of violence, 4) having received developmental
disabilities services and 5) having been diagnosed before six years
of age. The risk factors were: having FAE rather than FAS, higher
FABS scores rather than lower, and IQ scores above rather than below
70. It appears that having the more obvious syndrome (FAS) and lower
IQ increases the probability of detection and early intervention
which in turn has the effect of reducing secondary disabilities.
The home environment seems to be one of the major factors that
can influence whether a child with FAS/FAE ends up with secondary
disabilities. Huebert and Raftis (1996) remark that "many studies
examining information on the background of children with
alcohol-related birth defects suggest that there is a high degree of
familial upheaval" (p. 20). They found that numerous children are
never cared for by their biological mothers, many natural mothers
die when the children are very young, and a high number live in
multiple foster homes throughout their lives.
Being a victim of abuse or neglect seems to be fairly common in
these children. LaDue et al (1992) used the Symptom Checklist and
found that overall, 86% of the patients had been neglected, 52% had
a history of physical abuse and 35% had a history of sexual abuse.
As well, most of the subjects did not live with either biological
parent (77%), 26% were in foster homes, 21% were with relatives, 16%
were adopted and 9% were in group homes or institutions.
Ill and aging foster and adoptive parents are other environmental
problems that can threaten the home life of these children as they
mature. Abkarian (1992) adds that children with FAS are likely to
come from disrupted or dysfunctional families whose instability can
worsen the child's intellectual and social delays. The continuity of
the environment from birth is imperative for these children. They
appear to suffer if they are changed from one environment to
another.
Furthermore, it is important that the environment not only be
continuous, but also calm and supportive (Olegard, 1988). Better
social and emotional development appears to be related to stable
home environments.
Unfortunately, even the best parents and loving homes cannot
always prevent a child with FAS/FAE from developing further
problems. LaDue et al. (1992) found that in day-to-day living,
patients in tightly structured homes with attentive parents were
able to minimize but not prevent or eradicate problems. Sometimes,
academic, social and cognitive functioning is impaired in these
individuals regardless of their diagnosis, IQ or residential
placement. They assert that "although a positive environment can
minimize problems and an unstructured environment puts patients with
FAS at even higher risk, a good home does not always prevent the
psychosocial difficulties experienced by so many of these patients,
particularly those who remained several years in alcoholic
households as young children" (p.129). Niccols (1994) notes that
some children with FAS continue to exhibit developmental delay, even
while being raised entirely by excellent adoptive families.
Abkarian (1992) observes that FAS/FAE is related to birth order
with second, third, or later children being more likely to show
symptoms. This may be related to maternal age, as well as continued
or increased use of and tolerance to alcohol. Streissguth et al.
(1990) also found that alcohol effects were compounded by lower
paternal education and a larger number of small children in the
household. Overall, it is important to identify these risk and
protective factors in order to inform intervention efforts and
future preventative programs.
FAS/FAE and Delinquency
The link between FAS/FAE and delinquency may occur through a
developmental pathway that begins with attention deficit disorder
with or without hyperactivity, moves to conduct disorder and then
manifests itself in delinquent behaviour ( Oesterheld and Wilson,
1997). Independent of FAS/FAE, attention deficit disorder is linked
to delinquency and crime. The following studies do not directly
involve FAS/FAE children but they are still relevant for purposes of
this review.
Follow-up studies of children with attention deficit disorder
have shown that a significant number develop conduct disorder by
adolescence. As well, studies of children and adolescents with
conduct disorder concur about the strong predictive power of conduct
disorder for future psychiatric disorders and social adjustment
problems, antisocial personality, alcoholism and criminality
(Biederman, Munir & Knee, 1987). Considering the poor outcome
for children with attention deficit disorder, it is likely that the
outcome for FAS/FAE children would be a parallel if not worse
fate.
Delinquent children have certain predictors in common with
FAS/FAE children. Farrington (1995) conducted a longitudinal study
on 411 South London males, who were followed from age 8 to age 32.
The main predictors at age 8-10 of later delinquency were: 1)
hyperactivity-impulsivity-attention deficit, including poor
concentration, restlessness, daring and psychomotor impulsivity, 2)
low intelligence and poor school attainment, 3) family poverty
including low family income, large family size and poor housing, 4)
antisocial child behaviour including troublesomeness in school,
dishonesty and aggressiveness, and 5) separation from parents, poor
supervision, parental conflict, poor parental child-rearing
behaviour. These predictors would seem to describe FAS/FAE children
as well.
Loeber (1990) has also studied the development and risk factors
associated with juvenile antisocial behaviour and delinquency. He
focuses on the fact that "antisocial children suffer from a
disturbance in the development of impulse control" (p. 2). This lack
of impulse control reflects a handicap in verbally mediated control
over one's own behaviour. The main manifestations of disruptive and
antisocial behaviour in childhood and adolescence are: 1) infant's
difficult temperament, 2) hyperactivity, 3) overt conduct
problems/aggressiveness recognized at age 2 or later, 4) social
withdrawal, 5) poor peer relationships, 6) covert or concealing
conduct problems, 7) association with deviant peers, and 8)
delinquency and recidivism. Loeber (1990) notes that "antecedent
risk factors associated with
later hyperactive/inattentive behaviors include exposure of
children to neurotoxins such as lead, early malnutrition, low birth
weight, and mother's substance use during pregnancy" (p. 8). FAS/FAE
children definitely fit into this description of risk factors, and
characteristically show hyperactivity and attention problems as the
literature has demonstrated.
It is important to remember that not all children with FAS/FAE
will follow this developmental pathway that starts with attention
deficit disorder and ends in delinquency. Yet, many of the traits
describing these predeliquent children sound similar to the
behavioural phenotype of FAS/FAE individuals, so they may represent
a sub-group of the typical type of children who go on to become
involved in antisocial behaviour. As noted earlier, much of the
criminal behaviour typical of people with FAS/FAE appears to be the
result of maladaptive patterns such as impulsivity, difficulty
sorting out cause and effect and trouble understanding consequences.
When they have time on their hands due to unstructured days,
disrupted schooling, poor family supervision and unhealthy peer
groups, and compound their problems with judgement with use of
alcohol and drugs, they are more likely to get into problems with
the law. Although more research is needed on this issue, it appears
that even though children with FAS/FAE may progress along the same
developmental course as other children who become delinquent, they
may have different etiological reasons for their involvement in
crime. These reasons must be considered in treatment, rehabilitation
and supervision efforts.
In summary, it appears that a certain behavioural phenotype does
characterize children with FAS/FAE as they progress from infancy to
adulthood. The primary disabilities in infancy include irritability,
jitteriness, tremors, weak suck, problems with sleeping and eating,
failure to thrive, delayed development, poor motor control and poor
habituation. In the preschool years, problems such as hyperactivity,
attention problems, perceptual difficulties, language problems and
poor motor coordination are common. Once a child with FAS/FAE
reaches school-age the primary disabilities are hyperactivity,
attention deficits, learning disabilities, arithmetic difficulties,
cognitive deficits, language problems and poor impulse control. In
adolescence the primary difficulties are memory impairments,
difficulties with judgement, problems with abstract reasoning and
poor adaptive functioning. Some common secondary disabilities
characteristic of adolescents and adults with FAS/FAE are being
easily victimized, unfocused and distractible, difficulty handling
money, trouble learning from experience, problems understanding
consequences and perceiving social cues, poor frustration tolerance,
inappropriate sexual behaviours, mental health problems and trouble
with the law. These features may be one of the only ways in which
individuals with this syndrome may be recognized, seeing as the
physical phenotype often disappears as one matures. There are
identifiable risk and protective factors which can affect the degree
to which secondary disabilities are expressed. Common risk factors
include poor home environment, abuse and neglect and familial
upheaval. Some important protective factors are a stable and
supportive home environment and not being a victim of violence. As
well, there is a definite link between FAS/FAE, attention deficit
disorder with and without hyperactivity, conduct disorder and
delinquency. The link between attention deficit disorder and
delinquency is clear in the literature, and this same developmental
pathway can be expected in many FAS/FAE children who exhibit
predictors such as hyperactivity, impulsivity, attention deficits,
low intelligence, poor school achievement, antisocial child
behaviour and poor parental child-rearing.
PART 3: FAS/FAE IN THE CRIMINAL
JUSTICE SYSTEM
As explained in the previous section, children with FAS/FAE
appear to be at increased risk of offending. Many of the behavioral
features that are characteristic of children with FAS/FAE, such as
attention deficits, hyperactivity, and impulsivity, have been shown
in longitudinal studies to be predictors of delinquency and adult
criminal behavior (Farrington, 1995). Although there is substantial
evidence suggesting a link between FAS and crime, there is a dearth
of research examining FAS/FAE in the criminal justice system. In
fact, there are no known studies reporting the prevalence of FAS/FAE
in prisons. Because children diagnosed with FAS in the early 1970's
are only now reaching adulthood, much more is known about their
childhood problems involving home and schools than their later
adolescent and adulthood problems involving the criminal justice
system.
Recently, some recognition of the problems with the criminal
justice system faced by some individuals with FAS has been noted. In
a report on individuals with FAS (Government of Canada, December,
1992, page 2), it is stated that "emotional instability and
behavioral impassiveness often characterize their adolescent years,
with some going in and out of custody for criminal offences". It is
possible that children with FAE may actually be more likely to be
involved with the criminal justice system later in life than are
children with FAS because their symptoms are often not recognized
(Streissguth, 1997) and they fail to get the help they need.
Unfortunately, although individuals with FAE may be more likely to
end up in prisons than individuals with FAS, they are also probably
more likely to go undetected within the criminal justice system.
It is clear that FAS and FAE are lifelong disabilities that are
associated with high levels of distressing primary and secondary
disabilities (Streissguth, 1997; Streissguth & Randels, 1988).
The cognitive, social, and behavioral problems faced by individuals
with FAS/FAE are believed to lead these individuals into trouble
with the law, and then create further problems for them during
incarceration. Although primary prevention of FAS/FAE is ideal,
there is also need for interventions to reduce the physical, social,
and psychological problems of those who have not escaped the effects
of prenatal alcohol. The criminal justice system is one area where
intervention efforts may be considered for adults with FAS/FAE.
In the third and final section of this report, we will examine
the clinical implications of FAS/FAE in the criminal justice system
in terms of 1) the potential of screening and diagnosis, 2)
management and rehabilitation programs, and 3) risk management and
aftercare following release.
Screening and Diagnosis
In order to plan an intervention for individuals with FAS/FAE,
Stratton, Howe and Battaglia (1996) note that one must first
identify the targeted population and assess their needs. Along these
lines a recent government report recommended "Health and Welfare
Canada, in cooperation with Provencal and territorial health
departments, design and implement a research program to develop
diagnostic procedures to identify adults afflicted with FAS and FAE.
This research initiative shall be the first step in a comprehensive
program to provide assistance to adults whose lives have been
blighted by alcohol-induced injuries" (SADAC, 1992).
Streissguth (1997) has outlined a number of potential benefits of
diagnosis. First, identification of individuals with FAS and FAE
promotes visibility. Visibility helps alert individuals and services
to be more aware and understanding of the behaviors affected by
prenatal exposure to alcohol. Second, diagnosis of FAS or FAE
identifies a cause. This allows for a better appreciation of
behaviors that once seemed inexplicable and alters unrealistic
expectations of FAS and FAE individuals. In addition, this
encourages services to respond more appropriately and to set more
realistic expectations that would allow the individual to feel a
sense of accomplishment and self-worth rather than failure. Third,
the identification and acknowledgment of adults suffering with
FAS/FAE motivates the development of appropriate treatments and
interventions. Recognizing FAS or FAE at intake and determining
special needs facilitates effective treatment. Finally, diagnostic
records can aid in further research on needs-assessment, program
evaluation, and recidivism. Streissguth (1997) has suggested that
criminal records should include, where available, notations about
maternal alcoholism and diagnostic information on FAS and FAE. She
also argues that a tracking system for those with FAS and FAE across
multiple agencies would greatly improve the plight of individuals
with FAS and FAE and would help ensure that appropriate social,
educational, psychological, and medical interventions are made.
Unfortunately, despite these potential benefit, there is as yet no
agreed-upon method for diagnosing adults with FAS/FAE.
Potentially, identification can take place in two basic ways. One
is that the individual has already received an early diagnosis of
FAS/FAE, and the criminal justice system becomes aware of this
through their own pre-sentence investigative screening. As medical
personal become more aware of FAS/FAE the availability of an early
diagnosis is more likely. This would allow for the primary and
secondary disabilities associated with FAS/FAE to be considered
within all aspects of the criminal justice process (e.g.,
prosecution, conviction, sentencing, prison management,
rehabilitation programs, parole supervision, and aftercare).
Ideally, an early diagnosis would prevent an individual from
becoming involved with the criminal justice system in the first
place. In fact, research has shown that an early diagnosis (i.e.,
before the age of six) is associated with a lower rate of trouble
with the law (Streissguth, 1997). It is suggested that this may be
because an early diagnosis allows for better recognition of the
special needs of FAS individuals and allows adaptations to be made
to prevent or reduce secondary disabilities (Streissguth, 1997).
Although not the focus of this report, FAS/FAE children would
clearly be candidates for programs like Ontario’s Better Beginnings.
Unfortunately, not all individuals with FAS/FAE are diagnosed
early in life, and many may enter the criminal justice system
without ever being identified. This leads us to the second basic way
that identification can take place. That is, within the criminal
justice system. Although diagnosing an adult is not as optimal as
diagnosing an individual in early childhood, there are still many
potential benefits. Identifying adults with FAS and FAE in the
criminal justice system is the first step in assessing needs and
eventually providing them better services (Spohr & Steinhausen,
1987). As Streissguth (1997) notes, if individuals with FAS/FAE can
be identified early in the incarceration process, interventions may
protect against more serious later criminal behavior and improve the
management of these individuals during incarceration. Unfortunately,
research suggests that community service agencies often fail to
detect or diagnose FAS/FAE (Streissguth, 1997). The failure to
recognize FAS as the primary diagnosis of individuals may result in
misinterpretation of their secondary symptomatology and possibly
inappropriate treatment during incarceration. This is especially
true with FAE. Because their physical features are less apparent,
individuals with FAE are less likely to be identified and therefore
less likely to receive necessary services (Streissguth, 1997).
Screening for FAS/FAE in adult inmates will take considerable
skill and resources as researchers and clinicians have yet to
formally agree on screening and diagnostic assessment. Obviously,
one of the major current needs is to develop a standardized
screening procedure. At this point, the general strategy is to look
for clues and follow up suspected cases with more formalized testing
procedures. In all cases the assessor should first look for evidence
that FAS/FAE has ever been suspected in the past and, if possible,
obtain information from these sources. Clinical researchers, such as
Streissguth (1997), suggest four key areas that need to be covered:
maternal drinking history, physical features, cognitive functioning,
and social-behavioral functioning. As a general guide history taking
might be carried out along the lines of Streissguth’s Symptom
Checklist (see Appendix).
Maternal Drinking History. The interviewer
should establish whether there is a history of maternal alcoholism
dating back to child-bearing years (Streissguth, 1997). Specific
information from family members or other informants regarding actual
prenatal exposure (e.g. frequency of drinking, period of drinking,
etc.) is not always possible, but is helpful. Circumstances such as
a history of child abuse or neglect, an alcohol-related maternal
death, being raised by non-biological mother, and maternal illegal
drug use, all raise the need for further questioning (Streissguth,
1997).
Physical Features. Diagnosing FAS/FAE based on
physical characteristics is more difficult in adults. This is
because facial features tend to normalize after puberty, making the
facial features less distinctive (Streissguth, Aase, Clarren,
Randels, LaDue, & Smith, 1991). Because facial features are more
distinctive in children with FAS/FAE when they are between the ages
of 2 and 14, it may be useful, although not necessarily practical,
to examine preschool or early childhood photographs when diagnosis
is suspected (Streissguth, Aase, Clarren, Randels, LaDue, &
Smith, 1991; Streissguth, Moon Jordan, & Clarren, 1995). Earlier
in this paper it was noted that Astley and Clarren (1996) had
recently derived a photo analytic method that shows considerable
promise as a screening and diagnostic tool. The physical features
which best differentiate adults with FAS/FAE from those without are
microcephaly, short stature, thin upper lip, smooth philtrum, and
malformed or malaligned teeth (Streissguth, Aase, Clarren, Randels,
LaDue, & Smith, 1991; Streissguth & Randels, 1988). Height
and head circumference should be recorded and compared with
normative charts. Signs of birth defects (e.g., joint problems,
heart defects, cleft lips & palates), seizure disorders,
developmental delays, gross or fine motor problems, and short
palpebral fissures should also raise questions about the presence of
FAS/FAE (Streissguth, Moon Jordan, & Clarren, 1995). Physical
features that suggest the possibility of FAS/FAE should be followed
with further probing regarding cognitive and social functioning.
Cognitive Functioning. Particular
cognitive deficits have been found to be characteristic of adults
with FAS and FAE. Studies examining structural and functional brain
damage in adults with FAS and FAE are just commencing in this area
(Streissguth, 1997). Because it has not yet been possible or
practical to precisely measure the structural and functional
impairments in the brain in groups of people with FAS/FAE,
psychological tests have been used instead to provide a measure of
their primary disabilities. Intelligence tests and achievement tests
have been commonly used for this purpose.
Standardized IQ tests reveal a wide variability in presentation
among adolescents and adults afflicted with FAS/FAE (LaDue,
Streissguth, & Randels, 1992; Streissguth, Aase, Clarren,
Randels, LaDue, & Smith, 1991; Stratton, Howe, & Battaglia,
1996). In general, IQ scores for this population have been found to
range from severely disabled to normal with an average IQ of about
70 (LaDue, Streissguth, and Randals, 1992). In addition, they found
that performance IQ was higher than verbal IQ among those with FAS
and FAE. This discrepancy suggests CNS dysfunction related to memory
problems and abstracting abilities (LaDue, Streissguth, &
Randals, 1992). These authors note that memory problems are observed
in 73% of individuals with FAS/FAE. These abstracting and memory
deficits are thought to have effects not only on academic
functioning but also on functioning in daily life. Memory impairment
may cause someone to have difficulty learning from experience, while
difficulty with abstraction may create problems understanding
consequences.
Condry (1997) has observed that it may seem surprising that their
IQ scores are at this level, because often their superficial
language skills make them appear to be more competent than they
really are. Research using the Peabody Picture Vocabulary test
reveals that individuals with FAS/FAE have poor receptive language
(LaDue, Streissguth, & Randals, 1992). Thus, they may have
trouble understanding and interpreting meaning from information
presented aurally. More research is needed to examine the specific
language deficits among this population.
The wide variability in scores on intelligence tests makes it
difficult to use IQ tests for the diagnosis of FAS/FAE. Clearly,
mental retardation is not a defining feature of FAS (Streissguth,
1997). In assessing for FAS/FAE, researchers caution that it is
important to keep in mind that measures of these individuals' IQ's
do not correlate well with measures of their adaptive behaviors
(Streissguth, 1997). Thus, an individual with FAS/FAE who has an IQ
in the normal range may still have significant trouble living
independently in adulthood.
IQ scores of individuals with FAS/FAE are also not very good
predictors of their academic achievement (LaDue, Streissguth, &
Randals, 1992). When tested with the Wide Range Achievement
Test-Revised, researchers have found that on average their academic
functioning was at the grade 2 - 4 year levels (Streissguth, Aase,
Clarren, Randels, LaDue, & Smith, 1991; Streissguth &
Randels, 1988). Their arithmetic achievement was considerably lower
than would be predicted from their IQ scores. In contrast, spelling
and reading achievement were found to be within the predicted range.
Arithmetic deficits are often cited as problems faced by individuals
with FAS/FAE (Streissguth, 1997). These difficulties with arithmetic
are thought to be a strong contributor to their problems with
independent living and money management (Streissguth, 1997). The
high rates of disrupted school experiences (e.g., suspensions,
drop-outs) reported among individuals with FAS/FAE (Streissguth,
Barr, Kogan, & Bookstein, 1996) may be both contributors and
consequences of their academic difficulties.
More research on the cognitive impairments of adults with FAS/FAE
is badly needed. Although by themselves, IQ tests, achievements
tests, and neuropsychological test batteries such as the
Halstead-Reitan (Dyer, Alberts, & Neimann, 1997), can not
provide a diagnosis of FAS/FAE, they can help to isolate specific
deficits and provide estimates of cognitive functioning.
Social and Behavioral Functioning. The
areas of most concern reported by caretakers and clinical
observations of adults with FAS and FAE are adaptive and social
functioning (LaDue, Streissguth, & Randals, 1992). It was noted
that these adults did not appear to be functioning at a level that
allows for self-sufficiency and independent living (LaDue,
Streissguth, & Randals, 1992). The Vineland Adaptive Behavior
Scales (VABS; Sparrow, Balla, & Ciccheti, 1984) is a test that
is useful for documenting and quantifying adaptive functioning, and
is often used with populations with developmental disabilities. This
test is usually administered to caregivers and is composed of three
subscales (i.e., daily living skills, socialization, and community
skills). The test yields standard scores and age equivalents for
each of these subscales as well as an adaptive behavior composite
score, which is useful in predicting long-term functional abilities
of individuals. In addition, there is the VABS Maladaptive Behavior
Scale, which provides a measure of various forms of maladaptive
behaviors and yields a score and categorization level of
significant, intermediate, or nonsignificant maladaptive
behaviors.
Using the scale on a sample of 92 adolescents and adults with
FAS/FAE, LaDue, Streissguth, & Randels (1992) found a very low
overall level of adaptive functioning, much below the person’s
chronological age. This was surprising because these individuals
often appeared very alert and verbal on clinical examination. On
average, written and verbal communication skills and expressive and
receptive language, were at the level of an 8-year old and scores on
the daily living skills subscale at the level of a 9-year old. This
scale measures more repetitive and concrete skills such as hygiene,
money use, time, and job skills. Individuals did worst on the
socialization domain, with the average score at the level of
a 7-year old. This scale measures skills that are more
abstract and subtle, such as interpersonal skills and ability to
follow social rules and conventions. No differences were found on
adaptive behaviors between those with FAS and FAE. Clearly, poor
adaptive behavior is characteristic of this population, and as some
researchers have suggested may be their most handicapping disability
(Streissguth & Randels, 1988),.
As noted earlier in this review, this study showed an alarmingly
high level of maladaptive behavior among this population (LaDue,
Streissguth, & Randals, 1992). The majority (58%) had average
scores falling within the 'significant' level of maladaptive
behaviors. The most common maladaptive behaviors were
attention/concentration deficits (77%) and impulsivity (57%). Other
maladaptive behaviors which may be associated with their increased
involvement with the criminal system are teasing/bullying (53%),
lying, cheating, or stealing (49%), engaging in inappropriate sexual
behavior (21%), being negativistic or defiant (43%), intentionally
destroying own or another's property (25%), and being physically
aggressive (19%). Further, a significant proportion of the sample
had legal problems for sexual misconduct (13%), petty larceny (28%),
grand larceny (4%), vandalism (27%), drunk driving (23%), and
stealing (35 %). Clearly, the level of maladaptive behaviors among
this population is high, and present a great challenge to the
management of these individuals as adults (Streissguth, Aase,
Clarren, Randels, LaDue, & Smith, 1991).
Another test that might be considered as a screening tool for
FAS/FAE is the Fetal Alcohol Behavior Scale (FABS; Streissguth,
Barr, & Press, 1996). This test is given to caregivers and
measures the proposed behavioral phenotype of typical FAS/FAE
related behaviors. Although further research is needed to determine
the utility of the FABS as a screening tool for FAS/FAE, research to
date suggests that the average individual with FAS/FAE is
characterized by three times as many of the 36 FABS items as the
average individual without known fetal alcohol damage (Streissguth,
1997). Preliminary research using this scale suggests that some of
the more common items in the behavioral phenotype for FAS/FAE center
around difficulty modulating incoming stimuli (i.e., poor
habituation), and poor cause-and-effect reasoning, especially in
social situations. Thus, individuals with FAS/FAE are likely to get
overstimulated in social situations, overreact to situations with
strong emotional reactions and to display rapid mood swings set off
by seemingly small events. Their trouble in social situations is
suggested by their unawareness of the social consequences of their
behavior, poor judgment in whom to trust, and need to be the center
of attention.
The Life History Interview (LHI; Streissguth, Barr, Kogan, &
Bookstein,1997) is another tool that has been used to examine
secondary disabilities across the life span. This is a 70 minute, 37
page comprehensive structured interview designed to measure six
categories of secondary disabilities. These include mental health
problems, disrupted school experiences, trouble with the law,
confinement, and alcohol and drug problems. It also measures
environmental and intrinsic protective and risk factors. Although
this interview may be useful for understanding some of the
special problems faced by these individuals, there is no data yet
on the utility of this interview as a screening tool for FAS/FAE.
To go beyond screening a medical specialist ( dysmorphologist or
expert in medical genetics) is required, but any information
gathered during screening would be highly useful in arriving at a
definite diagnosis of FAS/FAE.
Issues in Identification and Diagnosis
One of the issues that arises in diagnosing individuals with
FAS/FAE is that many of these individuals often fit the diagnostic
criteria for other disorders such as ADHD, conduct disorders, and
substance abuse disorders (LaDue, Streissguth, & Randals, 1992).
It is important to identify a dual diagnosis of alcoholism and FAS
because those with FAS/FAE who are also severely dependent may
suffer additional neuropsychological impairment. Additional deficits
that have been noted in chronic abusers of alcohol are in the area
of memory, attention, new learning, visual-spatial skills, concept
formation, cognitive flexibility, set shifting, problem-solving and
ability to follow complex demands (Tonneato, 1997). It is important
in diagnosing these individuals to be aware of the dual diagnosis of
FAS/FAE with other disorders so that a more successful intervention
can be planned (Streissguth, Moon Jordan, & Clarren, 1995).
Researchers have emphasized the importance in considering other
biological syndromes in the differential diagnosis of FAS/FAE
(Mueller, 1991). Clinical evidence suggests that a definite
diagnosis of FAS/FAE may be difficult to confirm or to differentiate
between other syndromes (e.g., XYY syndrome) without the use of
chromosomal analysis (Mueller, 1991). Because there are children
with phenotypes that look similar to FAS (such as those with Blume
syndrome, or Dubowitz syndrome and various other conditions), no
absolute diagnosis of FAS is possible with out the fully defined
physical appearance (Streissguth, Clarren, Randels, LaDue, Aase,
& Smith, 1991). This is true even when a child has a positive
maternal history for prenatal alcohol exposure (Streissguth,
Clarren, Randels, LaDue, Aase, & Smith, 1991). Although some
neuropsychological tests have shown some promise in differentiating
between individuals with FAS and ADHD (Mirsky, 1989, as cited in
Stratton, Howe, & Battaglia, 1996), it is clear that more
research on differential diagnosis is needed. Undoubtedly, there are
difficulties with syndromal diagnoses, especially retrospective
ones, that limit the possibility of making a definite diagnosis of
FAS/FAE in adults (Streissguth, Clarren, Randels, LaDue, Aase, &
Smith, 1991).
A related problem is the distinction between FAS and FAE. If the
diagnostic criteria are too restrictive, only individuals with clear
cases of FAS would be identified. This would clearly be problematic,
because the behavioral and functional impairments associated with
FAE can have long-term consequences that can be as severe as those
with FAS (Conry, 1997; Huebert , & Raftis, 1996) . Because the
physical features of FAE tend to be more subtle than FAS, but the
social, behavioral, and neurological deficits just as devastating
(Conry, 1997), it is not accurate to view FAE always as a milder
form of FAS that deserves less recognition or treatment.
Because FAS was only identified in the last 25 years there is a
huge gap in our knowledge and ability to diagnose adults with
FAS/FAE. Caution must be taken in identifying this population
because of the uncertainty of the screening tools. It is clear that
identification by facial features is problematic in adulthood
(Streissguth, Aase, Clarren, Randels, LaDue, & Smith, 1991), and
that identifying by physical features alone would exclude many of
the individuals with FAE. One must be cautious and eliminate other
possible causes before making a diagnosis of FAS/FAE (Spohr &
Steinhausen, 1987). In addition, it is very important to assess
adaptive behavior of a suspected individual because IQ scores do not
correlate well with adaptive behavior nor do they provide an
indication of their success at living independently. Another caution
in administering and interpreting IQ tests is that one must be
careful not to interpret a higher performance IQ as a definite
indication of CNS dysfunction, because there is data to suggest that
performance IQ is often higher than verbal IQ in Native people
(Spohr & Steinhausen, 1987). Because of the great variability in
alcohol-induced damage, the problems with retrospective diagnosis,
and the various other teratogenic and environmental agents that may
interact with alcohol-related birth defects, one must use caution in
making any firm diagnosis of FAS/FAE. Clearly, a formal diagnostic
procedure and further research on the impairments faced by
individuals with FAS/FAE are needed before any rational intervention
or therapy can be carried out efficiently and effectively (West,
Goodlet, & Brandt, 1990).
There is also the issue of labeling that is frequently raised in
the context of identification and diagnosis. There are two sides to
this argument. Some feel that a diagnostic label can provide a
relief to the individual and their family to understand the specific
etiology of their lifelong disabilities (Streissguth, Aase, Clarren,
Randels, LaDue, & Smith, 1991). In addition, a label can be
helpful to counselors, staff, and others who can attempt to better
understand the difficulties faced by the individual and to work
around their cognitive and social deficits. Finally, a label can
allow for the access of particular services or benefits that could
be helpful in providing the individual with a fairer opportunity to
function productively in life.
The argument against labeling is centered around various risks
and harms. Some argue that labels can carry a stigma which can have
serious emotional and social repercussions (Spohr & Steinhausen,
1987). These labels may further stigmatize already stigmatized
groups, such as Aboriginals. Also, it is feared that a misdiagnosis
or unfounded labeling could result in an unnecessary burden on
caretakers, create guilt in the mother, provide an excuse for
behaviors that may be explained by environmental factors, and result
in overlooking other possible causes (Spohr & Steinhausen,
1987). Some feel that diagnosing someone with FAS/FAE is a problem
because it assumes that prenatal exposure to alcohol is the major
cause of the adults' problems, thus removing blame and terminating
the search for other causes (Spohr & Steinhausen, 1987). It is
important that one carefully weigh the pros and cons of labeling and
that the decision of whether or not to label someone with FAS/FAE is
based on the individual's best interest.
Some have suggested that rather than label a person with FAS/FAE,
we label the specific problems the person has (Spohr &
Steinhausen, 1987). It may be more practical to label individuals'
specific learning problems (e.g. arithmetic disability, difficulty
abstracting), attention problems (e.g., ADHD), and behavioral
attributes (e.g., impulsive, poor self-regulation, substance abuse,
anger problem, etc.) (Spohr & Steinhausen, 1987). These labels
provide more specific information about the impairments faced by the
individual and a better indication of how to treat the individual.
If this method of labeling were to be used in the criminal justice
system to identify the problems of each inmate, then programs could
be tailored not only to individuals who are diagnosed with FAS/FAE,
but to any individual who suffers from these particular
disabilities.
This alternate form of labeling has several potential benefits.
Some argue that qualifying for special services or programs in the
criminal justice system should be based on demonstrated need as
opposed to diagnoses, such as FAS/FAE. Thus, all individuals should
be given psychological, behavioral, and intellectual tests at intake
to obtain information about needed services. If we overemphasize the
importance of an FAS/FAE diagnosis and under emphasize the
behavioral and learning problems of adults in general who are in the
criminal justice system, we may overlook those who do not qualify
for a diagnosis but who desperately need assistance. Should access
to special treatment depend on whether a person's disabilities are
caused by exposure to teratogenic agents prior to birth and neglect
those who were exposed to harmful agents from their postnatal
environments? Many of the common impairments found among individuals
exposed to prenatal alcohol, such as attention deficits,
hyperactivity, learning disabilities, conduct disorders, and other
behavioral problems, have also been found among those who have been
exposed to poor postnatal environments, such as children of
alcoholics (Conry, 1997). These issues must be considered in
developing policies and interventions.
Recommendations
- That the criminal justice system consider initiating its own
pre-sentence investigative screening to determine if the
individual in question has ever received a diagnosis of FAS/FAE. A
positive identification would allow for the primary and secondary
disabilities associated with FAS/FAE to impact on all aspects of
the criminal justice process from prosecution to parole release.
FAS/FAE individuals are definitely at increased risk for coming in
contact with the criminal justice system and as medical personal
become more aware of FAS/FAE the availability of an early
diagnosis is more likely.
- It is likely that cases of FAS/FAE continue to enter the
prison system unrecognized. Correctional Services Canada might
consider developing a practical screening instrument for
identifying suspected cases of FAS/FAE early in the incarceration
process or acquiring such an instrument if one becomes available
elsewhere. The Offender Intake Assessment currently used by
Correctional Services Canada may prove to be a good starting
point. What is needed is research that would determine if
identifiable cases of FAS/FAE can be distinguished from patterns
shown by the general population of offenders on this instrument.
Alternatively, Streissguth’s research group in Seattle, Washington
has made considerable progress using a variety of instruments such
as the Vineland Adaptive Behavior (and Maladaptive Behavior)
Scale, the Fetal Alcohol Behavior Scale, the Symptom Checklist and
the Life History Interview supplemented with IQ and cognitive
testing. Advances in photo identification are also promising.
Suspected cases of FAS/FAE can be refereed to a medical specialist
for formal diagnosis.
- For reasons mentioned earlier in this paper, diagnosing adults
with FAS/FAE is currently a difficult feat. As an alternative to
diagnosis, Correctional Services Canada might direct its screening
efforts at identifying inmates’ specific learning problems (e.g.
arithmetic disability, difficulty abstracting), attention problems
(e.g. Attention Deficit Disorder), and behavioral attributes (e.g.
poor self-regulation, substance abuse) along the lines suggested
by Spohr and Steinhausen (1987). This strategy also provides
specific information about deficits and problems and can be very
useful not only with those diagnosed with FAS/FAE, but to any
inmate who is experiencing these difficulties. Thus, any services
or programs offered to inmates would be based on identified need
rather than diagnosis. In some ways this strategy would be an
extension to the screening and assessment that CSC currently
carries our with such batteries as the Computerized Lifestyle
Assessment Inventory.
- If screening and diagnosis or screening for FAS/FAE related
problems proves feasible, we recommend a computerized data base be
instituted This data base should prove valuable for research
purposes, for institutional programming, and for risk management
after release from prison.
Institutional Management and Rehabilitation
Programs
Awareness and Management. Recognition of
individuals with FAS/FAE in the criminal justice system and an
awareness that these individuals have had damage to the brain which
has medical, social, and behavioral consequences, is an important
step in intervention (Spohr & Steinhausen, 1987). In a recent
government report (Government of Canada, December, 1992, p. 31), it
is stated: "It is hoped that improved awareness, on the part of
social service and criminal justice agencies of the kinds of
disabilities typically experienced by children and youth affected by
FAE/S, may increase sensitivity to the existence of FAE/S adult
clients or offenders. This improved awareness by service providers
can be facilitated by way of informational materials and
in-service-training workshops. Organizations concerned with
assisting the learning disabled could act as a focal point for
distinguishing FAE/S-affected individuals from those with other
types of disabilities. Within the juvenile justice area, future
initiatives, including any public and professional education
packages that may be developed to bridge health and justice issues,
would include references to FAE/S."
In an unpublished study described by Streissguth (1997), in a
Washington State prison, it was discovered that the profile of
behaviors characteristic of adults with FAS/FAE was well known to
the corrections officers and counselors. However, they were unaware
that there was a name for this profile, and that it was associated
with brain damage caused by prenatal alcohol exposure (Streissguth,
1997) . This suggests that those working with inmates who have
FAS/FAE should be given information and training about FAS/FAE to
help them to better understand and deal with this population (Spohr
& Steinhausen, 1987).
An awareness that individuals afflicted with FAS/FAE have damage
to the brain that causes behavioral and developmental disturbances
would likely lead to more realistic performance expectations for
these individuals. It might also change the attributions given to
their maladaptive behaviors and the ways that these behaviors are
managed. Thus, rather than inferring that these individuals are
unmotivated, manipulative, or self-defeating, staff may be able to
see that their maladaptive behaviors are the result of neurological
impairments caused by fetal alcohol-associated brain damage. If
staff learn to recognize that primary symptoms (e.g., memory
problems, disorientation in time and space, impaired judgment) arise
from prenatal alcohol exposure, they may be less inclined to label
them negatively. This awareness may encourage staff to be more
patient and supportive with these individuals, and to provide them
with the attention, structure, and assistance that they need. In
turn, this may reduce various management problems (Streissguth,
1997).
Based on her experience with FAS/FAE children, Streissguth (1997)
has observed that they work best in an uncluttered environment where
there is order, structure and predictable routines. Establishing
clear consistent rules and giving instructions in a simple concrete
fashion works best. The same should be true of adults with FAS/FAE.
Its of interest that adults who have experienced severe brain
injuries also appear to function best in appropriately structured
environments (SADAC,1992). Streissguth also notes that supervision
with constructive feedback can reduce frustration and confusion in
FAS/FAE individuals. Similarly, because of their poor habituation
and tendencies to become over stimulated, FAS/FAE individuals
benefit from environmental arrangements that help control and
modulate sensory inputs (Streissguth, 1997). To the extent that
these factors can be taken into consideration, FAS/FAE inmates will
likely be easier to manage.
Because of the special needs of individuals afflicted with
FAS/FAE, Streissguth (1997) suggests that an institutional advocate
should be designated for these individuals immediately after their
arrival to the institute. An advocate is someone who understands the
nature of FAS/FAE, is aware of the individuals strengths and
limitations, and works with the individual to help them function
most effectively. Although individuals with FAS/FAE may adapt
relatively easily to the structured environment of the institution,
they may have great difficulty with the close interpersonal
interactions that take place in a confined setting (Streissguth,
1997). Their tendency to become easily overwhelmed in social
situations may result in troubling incidents and their tendency to
be overly trusting of others may result in victimization or trouble
making. According to the results of a functional analysis reported
by Dyer, Alberts, and Niemann (1997), disruptive behavior is more
likely to occur when staff attention is reduced, when there are too
many distractions in the environment, and when structured
programming is not in place. Brain damage of the type typically
associated with FAS/FAE is most likely manifest in "complex" and
minimally structured situations which require imposed order and
meaning in order for the person to behave adaptively. Thus,
individuals with FAS/FAE are likely to require close monitoring to
keep them out of trouble. An advocate may work to ensure that proper
monitoring and structure is provided for such individuals and this
in turn might help reduce the occurrence of negative
incidents.
Recommendations
- The criminal justice system and CSC in particular might
consider designing an FAS/FAE Awareness Manual and implement
in-service training at all levels in order to educate and raise
awareness about this condition. Program officers and psychologists
might be considered for more in depth training about FAS/FAE and
eventually take over the role of increasing awareness in other
personnel, such as parole and classification officers.
- Should a sufficient number of FAS/FAE offenders be identified
at a particular institution, CSC might consider appointing an
advocate, such as a program officer very familiar with FAS/FAE, to
help manage their behavior and look after their best interest.
Such an advocate would also be an excellent candidate for looking
after FAS/FAE awareness programs.
Rehabilitation Programs. An increased
awareness of the permanent neural deficits implicated in the
etiology of FAS does not rule out the need for psychological
intervention (Niccols, 1994). Treatments are needed to reduce
maladaptive behaviors and decrease secondary disabilities so that
the highest possible level of functioning can be attained. The costs
of these harmful behaviors and disabilities to both individuals and
to society are great. The high rates of depression, substance abuse
and suicide attempts among this population suggest that the personal
consequences of this disability are severe (Streissguth, 1997).
As of 1998, there is no known formalized treatment program for
adults with FAS/FAE nor any strong empirical evidence suggesting
that any particular treatment modality is more effective than any
others (Streissguth, 1997). This conclusion also applies to the use
of psychotropic drugs with this population (Stratton, Howe and
Battaglia, 1996). Also, given the multiple different problems that
these individuals exhibit, it is difficult to comprehend a single
treatment program meeting their needs.
There is little doubt that the treatment programs that CSC has
developed to meet the needs of their offender population in the
areas of social and life skills, cognitive skills, anger management
and substance abuse will be needed with FAS/FAE offenders. The major
question is -Are programs targeting these problem areas delivered
in a format that is suitable to FAS/FAE offenders? In the
absence of research that directly addresses this issue we can only
base our answers on what we know about FAS/FAE and what clinicians
who work with FAS/FAE have observed.
We know from the findings covered earlier in this paper that they
will likely need a great deal of help with basic social and life
skills as their adaptive functioning is very poor. Most do not
appear to function at a level that allows independent living.
Attention deficits, impulsivity and memory problems will make it
difficult for them to acquire or hold employment and to achieve
stable living. They show poor judgement and are at risk for
victimization. They have difficulty learning from experience and
their arithmetic disability leads to problems handling money, paying
bills, etc. Their problem solving is at a very low level.
Similarly, their impulsiveness often gets them into trouble, they
have poor tolerance for frustration and anger problems are
frequently reported. Most likely anger management programs will be
salient to their needs.
Difficulties with abstraction leads to problems understanding
consequences and their general disorientation makes it difficult for
them to perceive social cues or take the position of another person.
Even when their intelligence is in the normal range their thinking
is confused and characterized by cognitive errors. Thus cognitive
skill training would be useful.
There is a high rate of substance abuse in this population and
this problem often makes other problems worst. Substance abuse
treatment will clearly be needed.
Sexually inappropriate behavior is common and will also have to
addressed. In addition, many have psychiatric problems such as
depression that will require attention.
It is obvious that FAS/FAE offenders, whether male or female, are
multi-problem individuals with few resources and many deficits and
needs. Treatment will likely be difficult and without a great deal
of support and supervision the prognosis is likely to be poor.
Since adults with FAS/FAE are just now starting to be studied
little is know about how to treat them or their response to
treatment. Some of the suggestions for treating adults with FAS/FAE
come from treatment programs used with children with FAS/FAE and
from those used with mentally handicapped adults. The most obvious
feature of these programs is the strong use of structure and the use
of simple concrete instructions (Streissguth, 1997). Early targets
for intervention should include basic life skills including
communication, social skills, organizational skills such as managing
time money and recreation, and possibly anger management (Spohr and
Steinhausen, 1987).
Regardless of problems targeted, any treatment expected to be at
all effective must consider the cognitive deficits faced by this
population. Individuals with FAS/ FAE will have serious limitations
on their abilities to understand, interpret, and remember
information presented in typical treatment formats. They are likely
to forget material from earlier sessions, have trouble applying
abstract concepts to real life situations, and have difficulty
reasoning by analogy or problem solving (Tonneato, 1997). Given
these deficits program facilitators will have to work in a very
concrete fashion with a great deal of repetition (Condry, 1997).
Streissguth (1997) suggests that therapists who have experience
working with developmental and learning disabilities may be
preferable for treating this population.
Insight oriented therapies are definitely contraindicated with
this population. Instead, very practical directive strategies should
be used. Novick (1997) suggests that cognitive-behavioral with a
strong component of interpersonal skills training is helpful for
individuals with FAS/FAE because it is more concrete, directive and
skills-based than other therapeutic approaches. Such an approach has
proven useful in treating impulsivity in children and adolescents
(Farrington, 1995) and may be applicable to adults as well.
The general content of major programs offered by CSC, such as
social and life skills, cognitive skills, anger management and
substance abuse programs like the Offender Pre-release Substance
Abuse Program ( OSAPP; Lightfoot, 1989) are clearly appropriate to
inmates with FAS/FAE. However, it is likely that the content of
these programs will have to be simplified, made very concrete and
redundant with frequent reviews in terms of presentation. The pace
of presentation should allow plenty of time for practice and
repetition (Tonneato, 1997). Regular daily sessions would be
helpful, however, because of attention deficits these sessions
should be shorter in duration than the typical all-day format used
in many CSC programs (Streissguth, 1997). Intensive learning or
crammed learning would be counter productive (Tonneato, 1997). Such
individuals might also benefit from memory enhancement techniques,
such as chunking material into more manageable components and
utilizing visual imagery and cues cards to enhance recall (Tonneato,
1997).
Group size is also important. Because individuals with FAS/FAE
are easily overwhelmed by excessive social stimulation and easily
confused by tasks they have difficulty understanding, Streissguth
(1997) recommends that treatment should be carried out in very small
groups, or one-on-one.
Special attention may be needed for those with substance abuse
problems, which are more frequent in males than in females and in
those with FAE than in those with FAS (Condry, 1997; Streissguth,
Moon-Jordan and Clarren, 1995). There is some evidence that
individuals who are mentally handicapped and who also have alcohol
problems engage in many more disruptive behaviors than those without
alcohol problems (Westermeyer, Phaobtong, and Neider, 1998, as cited
in Streissguth, Moon-Jordan and Clarren, 1995). Condry (1997) and
others have noted that serious alcohol problems can worsen the
cognitive deficits (e.g. memory deficits) of individuals with
FAS/FAE and reduce their ability to cope.
It is important for counselors working with substance abusing
FAS/FAE inmates to understand the behavior patterns resulting from
their cognitive deficits. Streissguth et al (1995) note that it is
easy to misinterpret their behavior and accuse them of being
manipulative or in denial. Cognitive confusion, resulting in missed
appointments, can be misinterpreted as intentional and these
attributions can trigger punishment and staff retaliation, rather
than increased support and care.
Insight oriented treatments have a poor record in the field of
substance abuse (Hester and Miller, 1995) and are definitely not
recommended for substance abusing individuals with FAS/FAE
(Streissguth, 1997). Given the nature of FAS/FAE, simplified, highly
structured, real- life problem solving approaches along the lines
discussed earlier are likely to be most beneficial with this
population.
Since there is no research documenting the effectiveness of any
particular treatment over any other, any program designed
specifically for FAS/FAE offenders, whether for substance abuse or
any other problem area, should be carefully evaluated.
Because of the high rate of depression, suicide dangers and other
psychological problems in FAS/FAE individuals, provision also has to
be made for therapy to deal with these problems (Streissguth, 1997).
Such therapy should be carried out on an individual basis by
psychologists and psychiatrists familiar with FAS/FAE and the
general guidelines for treatment with this population noted
earlier.
Recommendations
- Provided that inmates with FAS/FAE can be identified, CSC
might consider designing and evaluating a special institutional
program for this population that takes into consideration their
specific cognitive deficits and behavioral patterns. The suggested
strategy would be to modify existing, well recognized programs in
the areas of social and life skills, cognitive skills, substance
abuse and anger management in the direction of making them more
structured, concrete and repetitive, allowing more time for review
and practice, and presenting material in shorter but regular
segments. One strategy for accomplishing this may be to ask the
original authors of these programs to consult with others who have
expertise in FAS/FAE and/or expertise in working with
developmentally handicapped or brain damaged adults. Also, given
the high proportion of Aboriginals with FAS/FAE and their similar
over representation in the criminal justice system, it may be
useful to consult with a culturally sensitive expert in this area.
- Programs should be carried out in small groups by facilitators
who understand the cognitive and behavioral deficits of FAS/FAE
individuals.
- Treatment of psychological problems, such as depression and
suicide ideation are best dealt with in individual therapy by
psychologists or psychiatrists with knowledge of FAS/FAE patterns.
Risk Management and Aftercare. Just as FAS/FAE
individuals need extensive programming within the institution for
their multiple problems, they are likely to need extensive help and
careful
monitoring after they are released on parole. Because these
individuals have great difficulty living independently, aftercare
should be extended as long as possible.
Housing arrangements that allow them to set up a simple,
structured lifestyle under fairly close monitoring would probably
work best. It would be important for caretakers and monitors to
understand the deficits and problems that FAS/FAE individuals are
likely to experience as they will need a good deal of support and
understanding rather than limit setting and over-reaction.
Extensive social and life skills training should ideally take
place close to their release date, and if possible, continue after
they are released. CSC might work closely with community social
services agencies to ensure job skills training. Jobs that are
straight forward and routine with appropriate supervision would be
best.
New challenges encountered on release are likely to be stressful
and confusing. As far as possible, careful planning should be in
place prior to release and inmates should be well coached to prepare
them for the transition. Parole officers with special training
should partly take on the role of advocate, maintain close contact
with their FAS/FAE charges, help with problem solving, and provide
support and encouragement in stabilizing these individuals in the
community, especially first few months of release.
For those with substance abuse problems a post-release relapse
prevention and maintenance program would be very valuable. However,
the CSC program that targets this period-the CHOICES Community
Correctional Brief Treatment, Relapse Prevention and Maintenance
Program (Lightfoot and Boland, 1992)-would be too intensive and
require too much cognitive processing for FAS/FAE inmates. The
program would have to be redesigned along the lines considered
earlier for this population. However, the three month maintenance
component of the CHOICES program would clearly be of value,
especially if it was bolstered by a strong problem solving approach.
This would specifically address crises and problems encountered by
FAS/FAE individuals that were likely to impact on their substance
use goals. If such a program proved feasible, the maintenance period
might be extended to six months or a year, especially in larger
centers. Throughout the process, close liaison should be maintained
between parole officers with FAS/FAE charges and maintenance program
facilitators as problems that arise may need the cooperation of both
parties.
Successful risk management and re-integration of the individual
into the community is likely to be very much dependent on careful
post-release planning.
Recommendations
- Because of their permanent neurological deficits and the many
secondary problems these deficits generate, FAS/FAE inmates will
require extensive planning for their release. Safe and appropriate
housing that allows them to establish structure and routine, job
training that allows them to work within their abilities,
continued social and life skills training that allows them to
improve their adaptive functioning, a long term relapse prevention
and maintenance program for those with substance abuse needs, and
close and supportive monitoring would all help ensure that a
stable and successful transition to community life would be made.
As with institutional programs, evaluation should be ongoing in
order to ensure further refinement as to what works with this
difficult population.
Final Comments
FAS/FAE is surely an area where an ounce of prevention is worth a
pound of cure. Given the prevalence statistics outlined in this
paper, especially with Aboriginal populations, we have a long way to
go in our prevention efforts. It is also clear than when prevention
fails, early intervention is called for. Again, considering the
course and consequences of FAS/FAE, including its impact on the
criminal justice system, much more needs to be invested in this
area. Finally, like health, educational and social services,
correctional services have a responsibility to do what they can to
ensure that individuals with FAS/FAE who come in contact with their
institutions receive the help they require to maximize their chances
of living a stable, crime free community life. No doubt this will
require considerable resources in terms of research and programming
in order to accomplish this worthwhile goal.
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APPENDIX A
Symptom Checklist (LaDue, Streissguth & Randels,
1992)
Problem |
Attention deficit |
School expulsion |
Memory problems |
Drug abuse |
Hyperactivity |
Alcohol abuse |
Child neglect |
Petty larceny |
Physical abuse |
Grand larceny |
Sexual abuse |
Vandalism |
Sexually inapropriate with
people |
Drunk driving |
Sexually inappropriate with
animals |
Lying |
Legal problems with sexual
misconduct |
Stealing |
Pregnancy/fathered a child |
Temper tantrums |
Truancy |
Symptom |
School suspension |
Disobedience |
School dropout |
Defiance of authority |
|
Seizure
disorder | |