This podcast episode is an excerpt of my part speaking on a panel titled “FASD & Suicidality” at the 2011 IHS/BIA/BIE/SAMHSA Action Summit for Suicide Prevention held in Scottsdale, AZ.

Panelist Members

(l to r): Michael Harris, Morgan Fawcett, Suzie Kuerschner, Kathryn Kelly, & Albert Allick

Kay Kelly (Project Director of the FASD Legal Issues Resource Center at the University of Washington @ http://depts.washington.edu/fadu/legalissues) and Morgan Fawcett (Tlingit flute player @ One Heart Creations) and his grandma Sue Hempel pulled together a terrific panel. Kay and Morgan spoke as well as Suzie Kuerschner (FASD Project Specialist @ Northwest Portland Area Indian Health Board), Dr. Albert Allick (psychiatrist @ Red Lake Band of Chippewa Indians), and myself.

Panel Description (from conference abstract):

Individuals diagnosed with Fetal Alcohol Spectrum Disorders (FASD) have neuropsychological deficits that may contribute to increased suicide risk. The Fetal Alcohol and Drug Unit (FADU) at the University of Washington did a pilot study using subjects drawn from their database of individuals diagnosed with FASD. Using the Lifetime Parasuicide/Suicide Attempt Count, it was found that one half of the study subjects reported at least one lifetime suicide attempt. It was found that 18% had made a severe suicide attempt, 27% had made a moderate-risk attempt and 9% had made a low-risk attempt. These rates of lifetime suicide attempts are significantly higher than the general population rate of 4.6% reported in the National Comorbidity Survey. Since FASD is found in Indian Country, an understanding of this possible link between FASD and suicide can be of help to behavioral health professionals in their efforts to address this very serious problem. If this potential for suicide is recognized in this population then appropriate services and effective interventions to reduce suicide attempts can be put in place. The panel will focus on practical suicide prevention strategies that can be utilized for those with FASD.

Podcast Notes

Here is the basic outline to my talk on the podcast:

1. Be Aware Of Suicide Signs in Self and Others
2. Be Connected to Self & Others
3. Be Settled to connect to Self and Others
4. Be Safe with Self and Others

There are also two articles on FASD and suicide:
Fetal alcohol spectrum disorders and suicidality in a healthcare setting, by M.R. Baldwin
Suicide attempts among adults with fetal alcohol spectrum disorders: clinical considerations, by J.E. Huggins, T. Grant, K. O’Malley, A.P. Streissguth

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Here are some websites to find more about Morgan, his CDs, and FASD:

• Morgan’s website for FASD advocacy: One Heart Creations
• Morgan’s CDs can be purchased from CD Baby or iTunes
• Morgan’s photography and music: www.morganfawcett.com
• Morgan’s videos: www.youtube.com/user/MorganFawcett
• Morgan on NOFAS: Tom and Linda Daschle FASD Hall of Fame

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• Facebook: FASD Wheel News & Tips
• Twitter: @FASDElephant
• YouTube: FASDElephant
• Sign up for email: Receive a free FASD Wheel™ Mini Manual

Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com.

I’ve had a very exciting year so far in the world of FASD. A major highlight in February 2011 was four days worth of workshops and talks I gave in Saskatchewan—for The Saskatoon Tribal Council in Saskatoon, for the Prince Albert Parkland Health Region way up in Prince Albert (in February), and for the FASD Support Network of Saskatchewan which had their annual conference called Communities of Hope in Regina.

A second highlight this year is that I joined a speakers mentoring group led by Bill O’Hanlon (the psychologist who developed Solution-Focused Therapy, a writer extraordinaire, and prolific speaker in New Mexico), Fred Gleeck (a business speaker who really knows how to coach developing speakers on the business side of the art) and Avish Parashar (a very successful corporate trainer who coaches developing speakers and helps with targeting your topic). These guys and my fellow mentees have really been inspirational and I can just feel the jump start to my work in presenting more about FASD but also finally developing my worksheets, charts and books that people keep patiently asking me about.

The final highlight I want to speak of is the topic of this and the next podcast: a recent visit here to Minneapolis by Morgan Fawcett and his grandparents, Sue and Roy Hempel. Here is an excerpt of the press release we created for his visit:

Hand drum for Morgan Fawcett

“Nineteen year old Morgan Fawcett is an accomplished Tlingit flute player with Fetal Alcohol Spectrum Disorder (FASD). With three albums released, a public speaking career, and a non-profit called One Heart Creations, it seems hard to believe Morgan has any disability. However, he names September 9th, 1991, as his first day of sobriety—the day a judge ordered his mother into alcohol treatment. “That is right,” he says, “My mother drank during her pregnancy, and this is why I raise awareness for FASD.”

“When I play the flute, it lowers my blood pressure and eases stress away,” says Fawcett. “With FASD, you could have ADHD; but instead of being on Ritalin, I play the flute.”

“Kids with FASD naturally seek their own ‘medicines’—usually rhythmic or sensory activities that help settle their damaged nervous systems so they can better cope with the ‘ordinary’ stressors of life,” according to Michael Harris, Indian Health Board psychologist who specializes in the disability. However, adults often mistake these medicines for willful misbehavior if odd or inappropriate—e.g., revolving in a swivel chair, pacing, leaving a room, or having a tantrum.

The trick, observes Harris, is for adults to first recognize that the child needs time to settle and regroup, and then to help the child find medicine that works both for the situation and for the child. For Fawcett, the flute is his medicine and his grandparents, Sue and Roy Hempel, perceived that and support it, so he can handle challenges that may be just minor hassles for those without FASD.

For teaching youth and professionals alike to use music and art as a medicine and enjoyable alterative to drugs, alcohol and video games, the National Organization on Fetal Alcohol Syndrome will induct Fawcett into the “Tom and Linda Daschle FASD Hall of Fame” in June 2011.”

Here in Minneapolis, Morgan gave talks to each class at a local American Indian magnet school, gave a lecture and concert at my workplace for the public, and honored students in the Warriors Circle groups with an original song, “Legacy,” at the elders’ and family luncheon for students.

I listened to him present about a dozen times to classrooms ranging from High-Five pre-kindergarten to eighth graders in the middle school. It was simply inspirational, to the say the least, to hear him and his grandmother tailor his message to such a wide developmental range. It was just amazing to watch the younger kids settle and focus when he started his presentations with a flute song and then how the older kids asked him tough and thoughtful questions about his disability, his life, and his medicine. People stayed to listen and talk to him for an extra hour after the public lecture and concert at my workplace.

It was also terrific to meet his grandmother, Sue Hempel, who contributed so well during the presentations and supported Morgan as his “external brain,” keeping him on track and providing support and additional stories and information tailored to the different ages. His grandfather Roy was also a great support in the background and part of Morgan’s team of support.

Along the way, I was able to interview Morgan and record it for the podcast. The interview covers topics that have not been normally addressed in the articles about Morgan you may find on the internet, as I wanted to focus on his experiences of transitions, moments of insight and connections, and what medicines he found helpful along the way in order to give listeners insight into what might help others with FASD be and feel successful. This includes having a family and their support, asking the right questions, and becoming strong in his Tlingit culture.

Half the interview is on this podcast, and the remaining will be released in another week or so. The show notes on the website has information about Morgan, how to purchase his CDs, and the name of his websites and contact data. Let me just say though, if you need a speaker for your FASD event, call them up. You will be inspired and glad you did.

Find Morgan on Facebook at www.facebook.com/morgan.fawcett and his own website at www.morganfawcett.vpweb.com for contact information and more about him and his work (including photography).

Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com.

I just re-designed and updated this mini-manual for the FASD Wheel™ in preparation of some great new changes and improvements coming over the next few weeks. It still helps if you’ve been to one of my classes (more on that in a few days), but this is a good, FREE resource and gives a quick history of the FASD Wheel™, too. Sign-up below!

Here is a short video of one of his talks to one of the school classrooms:

It has been quite a while since the last entry, but now there is more time for at least the blog and an occasional podcast–maybe even some video–so I want to re-awaken that interest in understanding Fetal Alcohol Spectrum Disorder (FASD), improve and increase workshop trainings and develop teleseminars, develop the workbooks and writings, create some joint ventures with knowledgeable figures in the FASD field, and focus on Mending the Broken Cord™ one step at a time.

Morgan Fawcett, Native American Flutist from Brad Fluetsch on Vimeo.

Morgan Fawcett, Native American Flutist entertains the 2010 Elizabeth Peratrovich Day Celebration, Juneau, Alaska.

Read about Morgan at: http://www.morganfawcett.synthasite.com/

Read about Elizabeth Peratrovich, Alaska Native Civil Rights leader at: http://www.alaskool.org/projects/native_gov/recollections/peratrovich/Elizabeth_1.htm

After the June conference on historical trauma in the Native American community, I will be adding more podcasts and information about FASD.

MLH

Although the event is over, here is a link to its Google Site, in which you can look through the talks and topics that were covered: MNAIMH Conference

Also, there is “Part Two,” the power point presentation hand-out… I never give these out at a training, because studies have shown people remember more with a different kind of hand-out (in Part One), but I know people want the power point, too, so here it is.

Enjoy, and I hope it goes well!

MLH

Please feel free to make and distribute copies, but please do not alter it in any way. If you have questions or comments, then contact me at Michael_at_FASDElephant_dot_com.

When a melt-down begins, all goals should change to “getting back to ready,” rather than trying to force compliance (which usually worsens the melt-down). Try the steps suggested in this podcast, and a free PDF hand-out comes with it in episode #012a.

Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com.

It has been quite a while since the last podcast, but we are ramping up production and will have new ones soon. In the meantime, here is a re-run podcast of an interview with Morgan Fawcett, a Native American flute player with FASD. You can now purchase his CDs from the internet, and I would really encourage you to do so and support his efforts in educating folks about FASD.

You may purchase his CDs at http://cdbaby.com/cd/morganfawcett or straight from iTunes, and there is a terrific article about him here: http://www.nativefluteonline.com/sacredground/fawcett.html

Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com.

This seemed like a great way to introduce FASD interventions, since Morgan discovered this intervention for himself on his own. Morgan also writes flute songs and has a CD of his songs that he sells at concerts and gatherings. Unfortunately, I do not have an official way for people to contact Morgan or his grandparents to purchase a CD at this time, but I will post it as soon as I get it, because he donates half the proceeds to charities that support individuals with FASD. He is developing a website at www.nativefluteonline.com.

In the meantime, you can check him and his music out with this link to The World online news site for Oregon: http://www.theworldlink.com/multi_slide/morgan_music/

And a news video link can be found here: http://www.kcby.com/news/local/9205127.html

Because of my travel schedule with the U.S. holidays, this will be the only podcast for November. I will aim to have one in December, or perhaps send out a PDF update, but we’ll get back on schedule for sure in January. I have an Occupational Therapist friend of mine lined up to talk about sensory interventions for FASD.

Feedback or comments may be sent to:

Michael__at__FASDElephant__dot__com.

Streissguth, et al (1996) conducted a four year study on the secondary disabilities of 415 individuals with FASD and found six secondary disabilites:

1. Mental Health Problems – 90% of the 415 had mental health conditions of any type; 61% had ADHD and more than 50% had depression.
2. Disrupted School Experiences – Over 60% had disruptions in school… from suspensions to drop-out.
3. Trouble with the Law – 60% had trouble with the law, with shoplifting and theft the most common crime.
4. Confinement – 50% had been confined, either incarcerated, inpatient mental health hospitalization, or inpatient chemical dependency treatment.
5. Inappropriate Sexual Behavior – 49% had displayed inappropriate sexual behavior, most common was sexual advances, sexual touching, and promiscuity.
6. Alcohol and Drug Problems – 35% had chemical abuse problems.

Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com.

1. STRUCTURAL BRAIN DAMAGE: The physical structure(s) of the brain are malformed or have failed to fully form (microcephaly). These are determined through measuring head circumference, MRIs, and (in extreme cases) autopsy.
2. BRAIN FUNCTIONING DAMAGE: The actual functioning of the brain is disrupted at the neurochemical, electrical, or metabolic levels. These are determined with EEGs and PET scans.
3. NEUROPSYCHOLOGICAL DAMAGE: Brain damage is inferred through observing and measuring an individual’s behavior and functioning levels across the Ten Brain Domains. This is a less costly, less invasive method of ascertaining brain damage and primary disabilities from prenatal alcohol exposure than those techniques used for the first two categories.

Website from the show: Juneau FASD Diagnostic Clinic – www.ccthita.org/TFYS-FASD.htm
Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com

In the meantime, I found an interesting website from Germany that has an animated FAS Facial Feature program, in which you can manipulate the various FAS Facial Features and visually compare them to an unaffected face. The program also allows for other facial features that are sometimes common to FASD, but not diagnostic.

The website link is: http://www.fasworld.de/index.htm, and the main website (mostly in German) is www.fasworld.de (look for the “Baby Face Animation” link toward the bottom of the page).

Also, I am sending though a PDF File of the FASD Evaluation Checklist discussed in last week’s podcast #009 (September 19, 2007).

Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com.

• Step 1: Choose a multi-disciplinary FASD Team that will provide the most thorough evaluation possible. (In the U.S., start with http://www.nofas.org/resource/directory.aspx; in Canada, start with http://www.faslink.org/ccsa%20Directory%202005.pdf.) ALWAYS make sure that the sensory/soft neurological domain is assessed, and obtain a separate Occupational Therapy (or, “OT”) evaluation if necessary.
• Step 2: Establish a history of prenatal alcohol exposure. If possible, interview birth parents, other family members, or people who know/knew the mom during the pregnancy. Obtain birth records, prenatal records (if possible), social service or adoption records, and relevant court records.
• Step 3: Obtain any and all medical records, especially those that have height and weight charts and developmental milestones. Current height, weight, head circumference, and medical conditions must also be available to the FASD evaluation team.
• Step 4: Obtain copies of any and all school records, if applicable. This will help assess the achievement domain, whether there are special education services in place or only grades and standardized test scores. Sometimes there will be behavior reports, too (suspensions or behavior referrals), that can help assess the adaptive behavior domain.
• Step 5: Obtain copies of any and all other reports of testing already conducted on the child: Psychology (including ADHD testing), Psychiatry, OT or sensory, neurology, ophthalmology, audiology, MRIs, chemical dependency, and anything else that might affect the child’s functioning or illustrate that functioning problems exist.
• Step 6: Be patient, but stay actively engaged in the process. You will be asked to fill out registration forms, insurance forms, release of information forms, and behavior ratings forms. Maybe more. You will be interviewed at least once, and possibly twice, either one lasting an hour or more. You may be asked to schedule a visit with a pediatrician, a psychiatrist, the psychologist, and several others—although some places have a one-stop shopping format, where all the professionals visit with the kid in one day.

You will feel like you’re waiting a long time for the feedback appointment, and possibly even the report (because of the enormous amount of data on your child that is being analyzed and interpreted). Hang in there, call the FASD team if it feels like you’ve been waiting too long, and advocate for yourself and your child. But the results and recommendations of a thorough FASD Report will be well worth the help to your person with FASD.

Additional Links from the Show:

FASD Support Network of Saskatchewan: www.skfasnetwork.ca
MN Social Service Association: www.mnsocialserviceassoc.org

Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com.

Links from the show:

Brain Conference – www.whiteearthchildcare.com/conference.htm

More info on the FASD Wheel™ and the power point presentation: www.FASDWheel.com

MOFAS’s Minnesota activities – www.mofas.org

Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com.

This is the second of a multi-part series edited from a workshop on the FASD Wheel (TM) presented at the 2007 Brain Conference on the White Earth Indian Reservation in Mahnomen, MN.

Fathers’ Role in FAS and FASD

During this portion of the talk, someone asked about the effects of a father using alcohol prior to or at conception, and I found the reference to an article that speaks to the father’s role. This topic would actually make a great podcast topic in the future, but for now, studies seem to suggest that the father’s alcohol use is associated with birth weight, heart defects, and mild cognitive impairments. These findings are not yet definitive, and there are animal studies that suggest more problems, but it looks like there could be an impact on one of the Ten Brain Domains–the cognitive domain.
Here is the article for your review: Abel, E. (2004). Paternal contribution to fetal alcohol syndrome. Addiction Biology, 9(2), 127-33.

Links from the show:

Brain Conference – www.whiteearthchildcare.com/conference.htm

FAS Day Celebrations – www.fasday.com

More info on the FASD Wheel™ and brain functioning: www.FASDWheel.com

MOFAS’s Minnesota activities – www.mofas.org

Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com.

This is the first of a multi-part series edited from a workshop on the FASD Wheel (TM) presented at the 2007 Brain Conference on the White Earth Indian Reservation in Mahnomen, MN… one of the largest annual conferences held in Minnesota.

Links from the show:

Brain Conference – www.whiteearthchildcare.com/conference.htm

FAS Day Celebrations – www.fasday.com

More info on the FASD Wheel™ and brain functioning: www.FASDWheel.com

MOFAS’s Minnesota activities – www.mofas.org

Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com.

Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com.

Their standardized approach is referred to as the Ten Brain Domains, which provides clear definitions of brain dysfunction, specifies empirical data needed for accurate diagnosis, and defines intervention considerations that address the complex nature of FASD with the intention to avoid common secondary disabilities.

The Ten Brain Domains include functional skills in the following areas:

1. Achievement,
2. Adaptive behavior,
3. Attention,
4. Cognition,
5. Executive functioning,
6. Language,
7. Memory,
8. Motor skills,
9. Sensory integration and soft neurological problems, and
10. Social communication.

These domains are reviewed in the podcast and will be further expanded upon in future podcasts.

Links relevant to today’s show

Fetal Alcohol Diagnostic Program
Article on the Ten Brain Domains

Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com.

Partial FAS (PFAS)

This diagnosis is easiest to explain and, in all practical purposes, the same as FAS. Previously known as Atypical FAS, individuals with PFAS have a confirmed history of prenatal alcohol exposure, but may lack severe growth deficiency or the complete FAS facial features. Central nervous system damage is present at the same level as FAS. These individuals have the same functional disabilities but “look” less like FAS. Here are the criteria:

1. Moderate to severe FAS facial features are present (small eyes, flattened philtrum, thinned upper lip),
2. Central nervous system (CNS) damage is severe (either structural or neurological problems, or problems in three or more functional brain domains), and
3. Prenatal alcohol exposure is confirmed.

Alcohol-Related Neurodevelopmental Disorder (ARND)

This is where the diagnostics become muddy to the average layperson, so I want to keep it basic. If you want a more thorough discussion, then you really need to sort through the 4-Digit Diagnostic Code manual, the IOM guidelines, the CDC guidelines, and the Canadian guidelines (highest recommendation). There really is not a good summary published that I know of, which is a serious gap in the FASD field.

For an ARND diagnosis,  an individual must have a confirmed prenatal alcohol exposure and evidence of clinically significant impairment in three or more of the following Ten Brain Domains: Achievement, Adaptive Behavior, Attention, Cognition/IQ, Communication/Language, Executive Functioning, Memory, Motor Skills, Sensory Integration/Soft Neurological Signs, and/or Social Communication. Growth deficiency and FAS facial features may be mild or nonexistent, and are irrelevant to the diagnosis.

Static Encephalopathy and Neurobehavioral Disorder

Additionally, the 4-Digit Code labels ARND as “Static Encephalopathy,” which literally means non-progressive brain damage. The 4-Digit Code also allows for Neurobehavioral Disorder, which is the same as static encephalopathy except that only two of the Ten Brain Domains are clinically impaired. This diagnostic category allows for the fact that prenatal alcohol exposure can create only a couple types of functional problems, and yet acknowledges prenatal alcohol as the source of the problems.

Additional Notes

Please understand that the problem with FASD conditions is not about the facial features or growth deficiency. It is about the CNS damage that then creates functional problems in an individual’s life. That is why the assessment of the Ten Brain Domains is so important and the most germain aspect to an FASD Evaluation: to find out how to help an individual function better. Don’t worry about getting caught up in the specifics all the diagnoses. Just know that if an individual had moderate to severe prenatal alcohol exposure AND has functional problems, then an FASD condition (disability) may be present.

This leads to another question that someone asked last week at a workshop I gave: “I had a few drinks before I knew I was pregnant, but stopped in the second month. My kid has terrific grades, but has low attention skills and poor social skills [Adaptive Behavior problems, from the Ten Brain Domains perspective]. Does this mean he has FASD?”

No. While there is no recommended safe level of drinking alcohol while pregnant, this situation does not result in an automatic FASD diagnosis. The attention skills and behavior problems would have to be severe, and the most important thing is missing: A diagnostic team would need to be convinced that the problems were related to the alcohol exposure. Attention and social skills can be affected by so many factors in life (e.g., genetics, peer group, parenting style, etc.) that this are not diagnostic. I would like to caution everyone not to “over-diagnose” just as much as I want to caution everyone to be knowledgeable about the potential negative effects of prenatal alcohol exposure.

Links discussed in the Show

• The manual for the “4-Digit Code” can be found at the University of Washington’s FAS Diagostic & Prevention Network website.
• An executive summary of the IOM Guidelines can be found here.
• The Centers for Disease Control’s “FAS: Guidelines for Referral and Diagnosis” can be found here.
• The Canadian guidelines are here.

Next week, we will review the Ten Brain Domains, which will start giving a better idea of what exactly CNS damage is. Until then….

Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com.

FAS requires a positive and severe finding in all four key features, but other FASD conditions may vary across a continuum of severity. FAS is the only expression of FASD that has garnered consensus among experts to become an official ICD-9 and ICD-10 diagnosis.

The four key features of FASD that are assessed with any diagnostic system include:

1. Growth Deficiency (height and/or weight)
2. FAS Facial Features (small eyes, flattened philtrum, thinned upper lip)
3. Central Nervous System (CNS) damage (either physical damage or functional problems)
4. Prenatal alcohol exposure level (confirmed, unknown, or no exposure)

To make this diagnosis or determine any FASD condition, a multi-disciplinary evaluation is necessary to assess each of the four key features for assessment. Generally, a trained physician will determine growth deficiency and FAS facial features. While a qualified physician may also assess central nervous system structural abnormalities and/or neurological problems, usually central nervous system damage is determined through psychological, speech-language, and occupational therapy assessments to ascertain clinically significant impairments in three or more of the Ten Brain Domains. Prenatal alcohol exposure risk may be assessed by a qualified physician, psychologist, social worker, or chemical health counselor. These professionals work together as a team to assess and interpret data of each key feature for assessment and develop an integrative, multi-disciplinary report to diagnose FAS (or other FASD conditions) in an individual.

The following criteria must be fully met for an FAS diagnosis:

1. Growth deficiency – Prenatal or postnatal height or weight (or both) at or below the 10th percentile at any point in life,
2. FAS facial features – All three FAS facial features present,
3. Central nervous system damage – Clinically significant structural, neurological, or functional impairment, and
4. Prenatal alcohol exposure – Confirmed or Unknown prenatal alcohol exposure.

Is FAS worse than other FASD conditions? No.

The fact is that other FASD conditions have more secondary disabilities, which will be discussed more fully in a future podcast.

Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com.

Sometimes, there are references bandied about that suggest the negative effects of fetal alcohol exposure have been known or documented in biblical or ancient Greek and Roman sources. These were first suggested in one of the first research articles on FAS (Jones, K.L., & Smith, D.W. (1973). Recognition of the fetal alcohol syndrome in early infancy. Lancet, 2, 999–1001. PMID 4127281 - By the way, a “PMID” link will often link you to an abstract of the original article, but in this case it only verifies that the article exists).

A more recent study (Abel, E.L. (1999). Was the Fetal Alcohol Syndrome recognized by the Greeks and Romans? Alcohol and Alcoholism, 34(6), 868-872. PMID 10659722), however, looked at the original sources and found that these references were, at best, apocryphal.

The earliest known observation of possible links between maternal alcohol use and fetal damage may have been made in 1899 by Dr. William Sullivan, a Liverpool prison physician who noted higher rates of stillbirth for 120 alcoholic female prisoners than their sober female relatives and suggested the causal agent to be alcohol use (Sullivan, W.C. (1899). A note on the influence of maternal inebriety on the offspring. Journal of Mental Science, 45, 489-503).

This view really contradicted the predominant theories of the day, which was that genetics caused mental retardation, poverty, and criminal behavior. A case study popular in the early 1900s by Henry H. Goddard involved the Kallikak family and shows the bias of the time period (Goddard, H.H. (1912). The Kallikak Family: A Study in the Heredity of Feeble-Mindedness. New York: Macmillan), though later researchers concludethat the Kallikaks almost certainly had FAS (Karp, R.J., Qazi, Q.H., Moller, K.A., Angelo, W.A., & Davis, J.M. (1995). Fetal alcohol syndrome at the turn of the century: An unexpected explanation of the Kallikak family. Archives of Pediatrics and Adolescent Medicine, 149(1), 45-48. PMID 7827659).

Prior to Fetal Alcohol Syndrome being specifically identified and named in 1973, a few studies had noted differences between the children of mothers who used alcohol during pregnancy or breast-feeding and those who did not, but identified heredity as the primary cause and alcohol use only as a possible contributing factor (Streissguth, A. (1997). Fetal Alcohol Syndrome: A Guide for Families and Communities. Baltimore: Brookes Publishing).

Fetal Alcohol Syndrome, or FAS, was named in 1973 by two dysmorphologists, Drs. Kenneth Lyons Jones and David W. Smith of the University of Washington Medical School in Seattle. They identified a pattern of “craniofacial, limb, and cardiovascular defects associated with prenatal onset growth deficiency and developmental delay” in eight unrelated children of three ethnic groups, all born to mothers who were alcoholics (Jones, K.L., Smith, D.W, Ulleland, C.N., Streissguth, A.P. (1973). Pattern of malformation in offspring of chronic alcoholic mothers. Lancet, 1, 1267-1271. PMID 4126070).

While many syndromes are eponymous, or named after the physician first reporting the association of symptoms, Dr. Smith named FAS after alcohol, the causal agent of the symptoms. His reasoning for doing so was to promote prevention of FAS, believing that if people knew maternal alcohol consumption caused the syndrome, then abstinence during pregnancy would follow from patient education and public awareness. Nobody was aware of the full range of possible birth defects from FASD or its prevalence rate at that time, but admitting alcohol use during pregnancy can feel stigmatizing to birth mothers and complicate diagnostic efforts of a syndrome with its preventable cause in the name. Over time, the term FASD is coming to predominate.

Diagnostic Systems

Since the original syndrome of Fetal Alcohol Syndrome (FAS) was reported in 1973, four FASD diagnostic systems that diagnose FAS and other FASD conditions have been developed in North America:

• The Institute of Medicine‘s guidelines for FAS, the first system to standardize diagnoses of individuals with prenatal alcohol exposure (Institute of Medicine (IOM), Stratton, K.R., Howe, C.J., & Battaglia, F.C. (1996). Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: National Academy Press.),
• The University of Washington’s “The 4-Digit Diagnostic Code,” which ranks the four key features of FASD on a Likert scale of one to four and yields 256 descriptive codes that can be categorized into 22 distinct clinical categories, ranging from FAS to no findings,
• The Centers for Disease Control‘s “Fetal Alcohol Syndrome: Guidelines for Referral and Diagnosis,” which established general consensus on the diagnosis FAS in the U.S. but deferred addressing other FASD conditions, and
• Canadian guidelines for FASD diagnosis, which established criteria for diagnosing FASD in Canada and harmonized most differences between the IOM and University of Washington’s systems.

Each diagnostic system requires that a complete FASD evaluation include assessment of the four key features of FASD–prenatal alcohol exposure, FAS facial features, growth deficiency, and central nervous system damage. A positive finding on all four features is required for a diagnosis of FAS, the first diagnosable condition of FASD that was discovered. However, prenatal alcohol exposure and central nervous system damage are the critical elements of the spectrum of FASD, and a positive finding in these two features is sufficient for an FASD diagnosis that is not “full-blown FAS.”

Diagnoses and diagnostic criteria will be described in detail in the next podcast.

Fetal Alcohol Spectrum Disorder (FASD) describes a continuum of permanent birth defects caused by maternal consumption of alcohol during pregnancy. Maternal alcohol crosses the placental barrier and can stunt fetal growth or weight, create distinctive facial stigmata, damage neurons and brain structures, and/or cause other physical anomalies. While prenatal alcohol exposure does not automatically result in FASD, the U.S. Surgeon General advises pregnant women to abstain from alcohol use due to the risk of FASD.

The main effect of FASD is permanent central nervous system damage, in which developing brain cells and structures have been capriciously garbled, malformed, or underdeveloped by prenatal alcohol exposure. The risk of brain damage exists during each trimester, since the fetal brain develops throughout the entire pregnancy.

Fetal alcohol exposure is regarded by researchers as the leading known cause of mental retardation in the Western world. In the United States alone, it is estimated that every year up to 40,000 infants are born with some form of FASD. The lifetime medical and social costs of each child are estimated to be as high as US$800,000 across the lifespan.

The term Fetal Alcohol Spectrum Disorder is not in itself a clinical diagnosis but describes the full range of disabilities that may result from prenatal alcohol exposure. Currently, Fetal Alcohol Syndrome (FAS) is the only expression of prenatal alcohol exposure that is defined by the International Statistical Classification of Diseases and Related Health Problems and assigned ICD-9 and ICD-10 diagnoses.

There are a number of other subtypes based on partial expressions of FAS, including Partial Fetal Alcohol Syndrome (PFAS), Alcohol-Related Neurodevelopmental Disorder (ARND), Alcohol-Related Birth Defects (ARBD), and Fetal Alcohol Effect (FAE). The latter two terms (ARBD and FAE) are not in general use today due to definitional vagueness.

There are four components to an FASD evaluation and diagnosis:

1. Growth deficiency (low height and/or weight, at birth or any point in lifetime)
2. FAS facial features (small eyes, smooth philtrum, flattened upper lip)
3. Central nervous system damage (there will be at least a couple podcasts just on this topic)
4. Prenatal alcohol exposure (drinking while pregnant)

Diagnostics will be covered in the next podcast.

Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com.

If you haven’t heard part one, go ahead and download it first. Next week, we will cover an overview of FASD, definitions, and the basics of FASD terminology.

Website mentioned in podcast: MN Organization for FAS – www.mofas.org

Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com.

It was a good interview, and we covered many topics concerning FASD. Next week, the second half will be released. Be sure to visit our friends at KDWA, at www.kdwa.com.

Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com.

Links mentioned in the show:

FASD Wheel website: www.FASDWheel.com

“The Blind Men and the Elephant:” http://books.google.com

Diane Malbin, MSW: www.fascets.org

For more information on FASD: www.mofas.org

Feedback or comments may be sent to: Michael__at__FASDElephant__dot__com.