Through the Lens of a Child Psychiatrist: The
Need to Distinguish FASD from other Neurodevelopmental Disorders
in the DSM-V
It has been three years since I co-authored an action paper requesting
that the American Psychiatric Association (APA) explore inclusion
of Fetal Alcohol Spectrum Disorders (FASD) in the DSM-V (APA’s
Diagnostic and Statistical Manual, Fifth Edition), and future editions.
During the months that followed, letters and emails of support and
encouragement came from around the country, including queries about
what effect this change would have on individuals with FASD and
their families. I appreciate this opportunity to highlight this
effort and explain the potential impact of such a paradigm shift
on prevention, research, diagnosis and treatment of FASD.
The aim of the action paper was to put FASD on the radar screen
of psychiatrists – to enable mental health professionals to
diagnose the spectrum of problems associated with prenatal alcohol
exposure by putting FASD in the DSM. The APA is currently in process
of developing guidelines and consensus in preparation of the DSM-V,
which is due to be published in 2012. Although the APA Assembly
approved the initial action paper unanimously, it is currently “dormant”
within the APA’s DSM-V Task Force while they are working on
refining existing diagnostic categories.
The DSM is a publication of all diagnosable mental disorders, ranging
from childhood onset developmental disorders (mental retardation,
learning disorders, ADHD, autistic disorders, etc.) to mood disorders
(i.e., depression and bipolar disorder), thought disorders (e.g.,
schizophrenia), substance use disorders, and personality disorders
to name a few. At present within DSM-IV TR (a text revision of the
DSM, Fourth Edition, released in 2000), there is no consistent way
to code for FASD. Fetal Alcohol Syndrome (FAS) is listed in Appendix
G (760.71) of the DSM-IV TR with other “congenital malformations”
and the ICD-10 (International Classifications of Diseases, Tenth
Edition) includes “fetus and newborn affected by maternal
use of alcohol,” but excludes FAS.
Lack of a consistent way to diagnose FASD by treating psychiatrists
results in a multitude of diagnoses for affected individuals, including
a variety of DSM diagnostic codes but rarely including either FAS,
partial FAS, or alcohol-related neurodevelopmental disorder (ARND).
Current treatment of affected individuals is therefore inadequate
due to lack of diagnostic clarity and lack of accepted psychiatric
treatment protocols, and often further complicated by undiagnosed
The 1996 Institute of Medicine report of the National Academy of
Sciences classified the effects of prenatal alcohol exposure into
five categories, including FAS with confirmed prenatal alcohol exposure,
FAS without confirmed prenatal alcohol exposure, partial FAS with
confirmed prenatal alcohol exposure, alcohol-related birth defects,
and ARND. FASD is the umbrella term to describe the continuum of
complex neuropsychiatric, cognitive, behavioral, and physical symptomotology
associated with all levels of prenatal alcohol exposure. The term
FASD is not intended for use as a clinical diagnosis, but instead
to broadly define the range of pathology that may be present (in
a similar way that autistic spectrum disorders describe the pervasive
developmental disorders). ARND is a term used to describe the range
of neurodevelopmental, psychiatric, and psychological (neurobehavioral,
cognitive, Axis I disorders) sequelae without the facial features
of FAS. Nearly all children with FAS or ARND present with developmental
disabilities but only 20 to 25 percent have mental retardation.
In our 2005 action paper, Roger Peele, MD., and I proposed a diagnostic
classification system for FASD similar to the Pervasive Developmental
Disorders category. FASD may be the overall heading, but not a diagnosis
per se. Much like the category of Alcohol Use Disorders compared
with Alcohol-Induced Disorders, the spectrum diagnoses would distinguish
FAS from ARND and the numerous developmental disabilities associated
with prenatal alcohol exposure (i.e., fetal alcohol-induced disorders).
The proposed classification system below was our attempt to begin
the process of thinking about how children with different severities
on the spectrum might be grouped clinically (not in research studies).
We were not attempting to define the clinical criteria for diagnoses.
FETAL ALCOHOL SPECTRUM DISORDERS
Fetal Alcohol Syndrome
Alcohol-related Neurodevelopmental Disorder
Fetal Alcohol-Induced Disorders
- Mental retardation associated with prenatal alcohol exposure
- Learning disorders associated with prenatal alcohol exposure
- Motor skills disorder associated with prenatal alcohol exposure
- Communication disorders associated with prenatal alcohol exposure
- Attention-deficit/hyperactivity disorder associated with prenatal
- Other cognitive disorder associated with prenatal alcohol exposure
Already in the DSM IV-TR there exists a range of childhood disorders
ranging from mental retardation to learning disorders, motor skills
disorder, communication disorders, ADHD, and other cognitive disorder.
We know from a wealth of existing literature in the FASD field that
alcohol can cause any number of these problems. Often I have heard
FASD researchers say, “What is ARND?” It is my understanding
that the Centers for Disease Control and Prevention have had a mandate
to answer that question since 2001. Clinically, I believe that ARND
is the entire range of neurodevelopmental issues that children may
have resulting from prenatal alcohol exposure.
FASD diagnosis and treatment involves a multidisciplinary team
approach (developmental pediatrics, psychologists, psychiatrists,
physical and occupational therapies, speech, education). Lack of
accurate diagnostic coding currently prevents families and individuals
with FASD from receiving appropriate comprehensive services and
results in poor outcomes for those individuals and costly consequences
for communities. Typically individuals with undiagnosed FAS or ARND
end up as recidivist clients in institutional settings, including
jails, mental health programs, psychiatric hospitals and homeless
shelters. Early accurate diagnosis has been shown effective in preventing
these secondary disabilities.
In terms of primary prevention, lack of diagnostic clarity leads
to a failure in childbearing age women to be adequately informed
about the lifelong neurodevelopmental problems and psychopathology
associated with drinking alcohol during pregnancy. Uniformity in
diagnosis would lead to better informing the population of the range
of known risks associated with maternal alcohol use, including neurodevelopmental
issues that many children are currently diagnosed with (but lack
the connection with the causative agent: alcohol). From a more global
epidemiological perspective, lack of accurate diagnoses currently
results in an under-reporting of these preventable disorders. If
we could accurately count the affected children, we would have a
clearer picture of the true epidemic of FASD.
From an epidemiological and public health perspective, a consistent
diagnostic framework for FASD would allow these disorders to be
counted (e.g., determining the numbers of individuals affected)
and focus our efforts on primary and secondary prevention in areas
of highest concentration. Since psychiatrists and mental health
professionals most often treat individuals with FASD, it makes sense
that they be able to diagnose and collect reliable surveillance
information through accurate coding. DSM diagnostic codes, like
the ICD, are used for insurance billing forms, which is very often
why individuals who do not meet full criteria for other disorders
are being coded inaccurately but would be more accurately coded
Over the past few years I have been struck by the number of FASD
researchers and clinicians who are either ambivalent or resist the
idea of including FASD in the DSM. One colleague confided that some
FASD researchers feel if FASD is in the DSM, that research funding
for FASD will decrease. Ironically, there remains a high amount
of research dollars for autistic disorders (ranging from molecular
and cellular studies all the way to brain imaging, epidemiology,
and treatment outcomes). Additionally, funding continues in annual
appropriations from our tax dollars for bipolar disorder, schizophrenia,
Alzheimer’s, dementia and other brain-based disorders already
included in the DSM. I strongly disagree with the sentiments that
there will be fewer research dollars and would argue to the contrary,
that finally FASD would have the credibility of a diagnostic framework.
I recently heard a presenter at a FASD meeting in Washington DC
say that at this time, we simply do not know enough about FASD to
include anything but FAS as a diagnosis in the DSM. After more than
35 years of research and countless federally funded studies, there
is more known about FASD than many other less understood psychiatric
disorders in the DSM. Accuracy in diagnosis of FASD will improve
our understanding by distinguishing it from other psychiatric and
neurodevelopmental disorders with differing neuropathological lesions
and neurochemical dysregulations. This would also allow FASD to
be studied in clinical trials of medications and other therapies
to ultimately benefit the children, adolescents and adults with
these preventable disorders.
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Poem: Who am I
I come from the rib of Adam.
I am a daughter of Eve.
I come from the land where the drumbeats once strong, now slowly
fade into silence.
I am a daughter of a fading song.
I come from a land where my Lakota words once spoken fluently, are
now known only to the elders.
I am daughter of a lost language.
I come from the land where our sacred songs, dances, and ceremonies
once meant something. Not only the people who were in charge but
also the people who participated where honest, kind and true. Now
that’s not only a joke, but our “leaders” can’t
even lead themselves.
I am a daughter of a dyeing culture.
I come from the land of the great Lakota Nation. Open prairie, rolling
grassy hills, the sand dunes of the Bad Lands, and the Black Hills
forever looming in the distance. The strong heartbeat of the buffalo
that once roamed, and the soft welcoming call of the eagle.
I am a daughter of South Dakota.
I come from the land of my people, the land where the drumbeats
can still sometimes be heard. They’re quiet but not yet0 silenced.
I am a daughter who will not lose her song.
I come from the land of my people, the land where my Lakota words
are not completely lost and can still be heard from the older ones.
I am a daughter who will learn to speak her language with the hopes
of it being spoken by many once again.
I come form the land of my people, the land where we can still find
people who are honest, kind, and true. There will be great leaders
again who an lead our people back to the strong nation.
I am a daughter of a culture that will be once again.
I come from the land of my people, the land of the Lakota, the Oglala
Sioux, deep in the Great Planes of South Dakota.
I am a daughter of the Pine Ridge Indian Reservation.
I come from a broken family.
I am a daughter who will never know her birth mother and father.
I come from the hospital where a brain aneurysm killed my mother.
I am a daughter of a father corrupted by drugs and alcohol.
I come from the land of my people, the land where I was rescued
and given another change at life.
I am a daughter of two amazing people who more than deserve the
title of “mom” and ”dad”.
I come from the land of my people; the land where I was born and
my story began.
I am a daughter who will never forget where she came from.
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FASD Experts: Multidisciplinary Forensic
Assessment for a Multidimensional Condition
It has been known since the mid-1990s that brain damage stemming
from prenatal exposure to alcohol causes secondary as well as primary
disabilities. Primary disabilities involve deficits in basic areas
such as attention, achievement, activity level, cognition, language
skills, memory, motor skills and social skills. The term “secondary
disabilities” refers to adaptive deficits that emerge from
childhood through adulthood if there has been no diagnosis and treatment
of primary disabilities earlier in life.
In 1996, FASD researchers led by Dr. Ann Streissguth at the University
of Washington in Seattle published a groundbreaking study commissioned
by the Centers for Disease Control on the types and severity of
secondary disabilities associated with Fetal Alcohol Spectrum Disorders
(FASD) (CDC, 1996). The study sample involved 661 patients ranging
in age from 6 to 51 who had been diagnosed between 1973 and 1995
with an FASD condition (e.g., Fetal Alcohol Syndrome or Fetal Alcohol
Effects/Possible Fetal Alcohol Effects, both of which are now referred
to as Alcohol Related Neurodevelopmental Disorder). Data regarding
each subject’s life experiences were obtained via an extensive
Life History Interview with informed collateral individuals who
“best knew” the subject throughout his/her life.
Of the eight major findings in that study, five were essentially
an indictment of how individuals with FASD conditions have been
treated by the criminal justice system in our society. In particular,
the study illustrated that for individuals with FASD who were over
the age of 12, 90% had suffered mental health problems, 60% had
trouble with the law, 50% had displayed inappropriate sexual behavior
one or more times, 50% had been confined at some point in their
lives (defined as incarceration or inpatient treatment for mental
health or substance abuse problems), and 30% had suffered alcohol
and/or drug problems.
Despite the far-reaching implications in this study, scant attention
has been paid in the forensic or legal fields to the fact that FASD
conditions involve permanent brain damage with pervasive and long-range
neurodevelopmental effects that can have significant influence on
how affected individuals behave. In fact, a literature search finds
only three published articles that address the link between FASD
and criminal behavior (Baumbach, 2002; Fast, Conry & Loock,
1999; Ferry, 1997), and all three agree that it is time for a new
level of attribution in the legal field with respect to FASD. In
other words, rather than assuming individuals with FASD engage in
criminal conduct solely because of a bad environment and free will,
research has demonstrated that brain damage is the reason why such
individuals cannot maintain pro-social behavior in the face of negative
In an attempt to address this significant oversight in the criminal
justice system, a team of specialists in Seattle has formed a multidisciplinary
forensic diagnostic group that focuses specifically on defendants
in capital cases who are either in the trial or post-conviction
phase of the legal process. Calling themselves FASD Experts, the
team is composed of three specialists who assess and diagnose adolescents
and adults with suspected FASD: psychologist Natalie Novick Brown,
Ph.D.; neuropsychologist Paul
Connor, Ph.D.; and psychiatrist Richard Adler, M.D.. The team
may recommend additional experts such as Fred Bookstein, Ph.D.,
a statistician/morphometrician, to analyze the results of structural
MRI’s. Dr. Bookstein developed a computerized method for analyzing
MRI images of the corpus callosum (an important brain structure
involved in information transfer between the two lobes of the brain)
to determine statistically whether there was evidence of the kind
of brain damage typically seen in individuals with FASD conditions.
Prior to forming their FASD multidisciplinary assessment team,
two of these experts had extensive personal experience as independent
forensic experts within their respective fields. Dr. Adler, the
team’s medical doctor, has almost 20 years experience in both
the clinical and forensic fields. In addition to FASD, he also is
a specialist in Attention Deficit Disorder, a co-morbid condition
found in almost all individuals with fetal alcohol impairment. Dr.
Brown, the team’s psychologist, began evaluating and testifying
in capital cases involving FASD in 2005. Her training included a
year of specialized postdoctoral work with Dr. Ann Streissguth at
the University of Washington’s Fetal Alcohol and Drug Unit
in the mid-1990s, and 14 years of work in the FASD field as a forensic
evaluator and treatment provider. While the team’s neuropsychologist
Dr. Connor has relatively limited forensic experience, his credentials
in FASD neuropsychological research are unmatched in his field.
For example, he served as project director for the Seattle Longitudinal
Prospective Study, which enrolled approximately 500 subjects prior
to birth with known levels of prenatal alcohol exposure; he was
co-investigator for a study involving MRI assessment and neuropsychological
functioning in patients with FASD conditions; and he was principal
investigator for a study of functional MRI assessment that addressed
brain activation in relation to several tests of cognitive function
known to be impaired in FASD subjects.
FASD Experts has been involved in over 20 legal cases to date.
Most of the cases involved clients either in the post-conviction
phase of defense or already on death row. A few cases involved clients
in the pre-trial phase. Referring attorneys were members of state
or federal defense teams from jurisdictions throughout the United
The team’s assessment process begins with a phone call to
psychologist Dr. Brown from an attorney who suspects fetal alcohol
impairment in his or her client. After intake information is obtained,
Dr. Brown explains the team’s sequential assessment process,
noting that in order to keep legal costs at a minimum, the multidisciplinary
assessment is conducted in discrete steps that may be halted at
any point in the sequence if diagnostic criteria are not met. The
team uses diagnostic criteria published in two sets of federal guidelines
(IOM, 1996; CDC, 2004), which are themselves based upon many years
of published scientific research. In 1996, the Institute of Medicine
established guidelines for five conditions under the FASD umbrella,
including Fetal Alcohol Syndrome and Alcohol Related Neurodevelopmental
Disorder. In 2004, the Centers for Disease Control refined the diagnostic
criteria for one of these conditions, Fetal Alcohol Syndrome, incorporating
the measurement precision of the 4-Digit Diagnostic Code. (The 4-Digit
Diagnostic Code was developed at the University of Washington in
the late 1990s by Drs. Susan Astley and Sterling Clarren and is
now in use worldwide.)
Following forensic intake, Step 1 in the diagnostic process is
functional assessment by Dr. Brown to determine if the client’s
behavior from early childhood to the present reveals evidence of
functional deficits (i.e., cognitive-behavioral and developmental
abnormalities). Her assessment involves adaptive skills testing
and extensive document review, including medical records, school
records, and all other records pertaining to the client’s
life as well as legal records involving the instant offense. As
part of her assessment, Dr. Brown also may conduct collateral interviews
with family members (including, if possible, the birth mother) to
obtain information regarding neurodevelopmental problems and the
birth mother’s drinking behavior during pregnancy. If psychological
findings are consistent with FASD, the results are summarized in
a report. Prior to testimony, if both neuropsychological testing
in Step 2 and the medical examination in Step 3 are positive for
FASD, Dr. Brown will conduct a face-to-face interview with the client
to rule out other potential causative factors (e.g., Antisocial
Personality Disorder, acute mental illness).
If the results of Dr. Brown’s assessment indicate historical
evidence of functional problems due to fetal alcohol damage, Dr.
Connor will undertake Step 2 in the process: neuropsychological
testing to determine if there is evidence of current functional
damage. In addition to a standard battery of neuropsychological
tests, Dr. Connor also administers tests found in the research to
be particularly sensitive to the effects of prenatal alcohol exposure
(e.g., tests of executive functioning). If neuropsychological findings
are consistent with FASD, the results are summarized in a report.
At the conclusion of their respective historic and current functional
assessments, the reports from Drs. Brown and Connor are submitted
to the diagnostician on the team, Dr. Adler. In addition to reviewing
these reports, Dr. Adler’s process involves face-to-face examination
of the client and review of relevant medical records, which typically
include the birth mother’s medical records as well as the
client’s records. If diagnostic criteria are met based on
the federal guidelines, Dr. Adler renders a diagnosis.
Once FASD is diagnosed in Steps 1, 2, and 3, and other competing
causative explanations are ruled out, team members are available
to testify about their findings in the assessment process. In addition,
Dr. Brown testifies about how the lifelong functional impairments
as a result of prenatal alcohol exposure led to the client’s
conduct in the instant offense. Results of the group’s efforts
have been promising to date:
in a case involving a 15 year old charged with second degree murder,
an FASD diagnosis was instrumental in preventing waiver to adult
- in a habeas case involving a man on death row, a judge found
in favor of defense based on an FASD condition;
- in a recent sex offense trial, a jury found that an FASD condition
constituted a mental defect, and two members of that twelve-member
jury found that FASD constituted reduced responsibility;
- in a vehicular homicide case, initial evaluations by team members
resulted in a requirement that the state’s evaluation be
conducted by an expert in developmental disabilities; and
- in a capital murder case, evidence of the structural brain
damage associated with the defendant’s FASD condition was
an important factor in the jury’s failure to convict.
It should be noted that although FASD Experts has worked in a number
of defense cases, the group also does work for the prosecution and
state (e.g., cases involving evidence that the victim of an offense
had an FASD condition and was therefore particularly vulnerable
to sexual victimization).
Recently, the team implemented a program to provide forensic assessment
training to other multidisciplinary groups in the United States
and other countries. However, FASD Experts is still the only known
multidisciplinary assessment team that specializes in forensic assessment
of adolescents and adults with FASD in the legal context. Given
the now long-standing awareness that prenatal alcohol exposure often
involves permanent brain damage that directly impacts an individual’s
capacity to make competent decisions and resist impulses, FASD Experts
is working toward a new level of awareness in the criminal justice
system for individuals with FASD.
For more information on our diagnostic process and contact information,
visit our Web site at www.fasdexperts.com.
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6th Annual FASD Family Summer Camp
The 6th Annual FASD Family Summer Camp will take place Wednesday,
August 20 through Sunday, August 24, 2008 at Camp Volasuca in Sultan,
Washington (just 40 miles northeast of Seattle). There may still
be available spaces for a couple of families.
The camp features activities for children and adolescents with
FASD, their parents, and even their siblings, so remember to bring
the whole family. Parent training activities will be offered by
the FAS DPN staff and others.
Camp lodging, meals and activities are included. This includes
meals and snacks from Wednesday through Sunday lunch. Camp accommodations
include tent cabins with bunk beds, bathroom and shower facilities,
a swimming pool, trampoline, miniature golf course, playfield and
many other camp amenities.
If your family would like to participate, please complete and mail
the registration form available at the NOFAS
Web site, along with a $350 registration fee made out to NOFAS Washington.
This registration fee ensures your spot for your entire family.
If you have any questions or concerns about the fee please contact
NOFAS for scholarship information. Spots will be filled on a first-come,
first-serve basis and the camp is limited to approximately 100 participants
(about 20 families), so don't wait! We will send a follow-up letter
by July 1st to confirm your participation and provide you with more
information that includes what to bring, directions, agenda, etc.
The camp serves biological, adoptive and foster families as well
as grandparents and other relatives serving as caregivers for children
with alcohol related disabilities. All camp activities focus on
strengthening and empowering families and increasing their capacity
The goals of the Fetal Alcohol Spectrum Disorder Family Summer
Camp include the following:
- To provide access to services and support systems focused on
the prevention of the secondary disabilities of FASD (substance
abuse, school failure, multiple home placements and involvement
with the juvenile justice system).
- To provide an opportunity for families of children with FASD
to gather in a supportive environment to develop and enhance their
network of family supports.
- To provide parents and caregivers with an opportunity for respite,
education and networking.
- To provide children with FASD the opportunity to interact with
other children in developmentally supportive and well-supervised
recreational and social activities.
- To provide opportunities for siblings to meet and interact and
with other siblings of children with FASD.
The Fetal Alcohol Spectrum Disorder Family Summer Camp is funded
by donations, grants, fundraising and in-kind contributions. We
are able to keep costs down by utilizing volunteers, donations and
donated supplies. We are currently seeking grants and individual
donations to fund the camp. We would appreciate your donation to
support this fun and educational family experience. Please consider
making a tax deductible donation or volunteering your time at the
- Volunteer/Donate - If you are interested in
volunteering your time or donating money or supplies for the camp
please go to our Web site at www.nofaswa.org
and print out the appropriate forms.
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Submit an Article to Iceberg
Our goal at Iceberg is to publish current information impacting
those with FASD, their families, caregivers and professionals. We
strive to include a range of voices in our articles. If you have
a compelling story to tell about FASD, please submit an article
for our pages. Email it to firstname.lastname@example.org with your article
included as a Word attachment. We look forward to your contributions.