June 2008

• Through the Lens of a Child Psychiatrist: The Need to Distinguish FASD from other Neurodevelopmental Disorders in the DSM-V
• Poem: Who I am
• FASD Experts: Multidisciplinary Forensic Assessment for a Multidimensional Condition
• 6th Annual FASD Family Summer Camp
• Submit an Article to Iceberg

Through the Lens of a Child Psychiatrist: The Need to Distinguish FASD from other Neurodevelopmental Disorders in the DSM-V

By Susan D. Rich, MD, MPH

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 medical problems.

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 alcohol exposure
• 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 as FASD.

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.

Susan Rich is a child/adolescent and adult psychiatrist in private practice in Potomac, Maryland. She has been a board member of NOFAS since 1998 and is certified by the American Board of Psychiatry and Neurology.

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Poem: Who am I

by Brittney Derry

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.

Brittney Derry is a talented young woman with FASD. She resides in Washington state.

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FASD Experts: Multidisciplinary Forensic Assessment for a Multidimensional Condition

By Natalie Novick Brown, Ph.D.

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 environmental influences.

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 States.

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 court;

• 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.

View References

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6th Annual FASD Family Summer Camp

by Julie Gelo

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 to succeed.

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 camp.

• 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 iceberg_fas@yahoo.com with your article included as a Word attachment. We look forward to your contributions.

Thank you.