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August 2005


“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed it’s the only thing that ever has”     
-Margaret Mead

Getting FASD in the DSM: The Work of a Few Good Doctors

by Kathleen Mitchell

Over time, I have come to the conclusion that more specifically diagnosing Fetal Alcohol Spectrum Disorders (FASD) is key to both prevention and treatment. This is based upon my own experiences and observations in the professional world.

The day my daughter, Karli, was diagnosed with Fetal Alcohol Syndrome (FAS) I knew that my life had changed forever. For 15 years I had searched to understand why she was not learning and growing stronger like my two other children. The most common misconception that I encountered was that Karli was going to “grow out of it.” Physicians told me that her developmental disabilities were a result of suffering from chronic ear infections. “Give it some time, children are very resilient to these types of delays; she’ll be fine,” was the message I heard over and over again.

Karli is now 32 years old. She never did grow out of it. Once she was correctly diagnosed with FAS and I understood that Karli’s disabilities were a direct cause of my drinking during pregnancy, it catapulted me into advocacy. I had not known that alcohol could cause harm to my unborn child. I knew then I had to tell others of what had happened to Karli. I jumped in with both feet, and shared our story with all who would listen to educate other women. This was to become my destiny; if I could prevent one alcohol exposed birth, then my time was well spent.

During my advocacy efforts, I met Susan Rich, who shared a similar passion for FASD prevention. Since then, she has become a child psychiatrist and is currently completing a two-year fellowship at Children’s National Medical Center in Washington, D.C. Along with Dr. Roger Peele, an American Psychiatric Association (APA) trustee, she recently wrote and submitted an action paper that advocates that APA explore having FASD included in DSM-IV-CR / DSM V (Diagnostic and Statistical Manual for Mental Disorders, Book IV Content Revision and Book V, respectively) and subsequent editions of the manual. Dr. Kieran O'Malley of the University of Washington's Fetal Alcohol and Drug Unit offered invaluable assistance and guidance for her paper. I was delighted to be included in that process. We also had brilliant input from Adam Litle, our past Director of Public Policy at the National Organization on Fetal Alcohol Syndrome (NOFAS).

The paper was quite a success! It received a unanimous endorsement from the Washington Psychiatric Society Board of Directors, as well as from the Mid-Atlantic States, the APA, the American Academy on Child and Adolescent Psychiatry's Assembly, the Area Committee on Members-in-Training, and the APA's Assembly (at their annual meeting in May 2005).

The importance of having a psychiatric code for FASD from infancy to adulthood has been discussed for years. This code will open the doors for early intervention. Currently there is no way for psychiatrists to diagnose FASD, although they are typically the ones who treat individuals with FASD. The majority of individuals with FASD do not have mental retardation, but may have numerous behavioral, mental and/or psychiatric issues that place them in the care of psychiatrists. Psychiatrists will treat them based on symptoms and behaviors, even when they suspect the issues are related to prenatal alcohol exposure.

Pediatric dysmorphologists typically are the medical professionals that diagnose FAS, but may not identify other disorders associated with prenatal alcohol exposure such as Alcohol Related Neurodevelopmental Disorder (ARND). As well, the dysmorphologists form their diagnosis based on the transitory appearance, from ages 6 to 12 years, of the classic FAS facial dysmorphology. Some physicians report that they are reluctant to diagnosis FAS because there are really no treatments or services available, so they prefer not to “label” children.

Obviously, failure to identify and diagnose these disorders results in underreporting of FASD. Most health care professionals and institutions are greatly ill informed on this issue and view it as a “rare disorder.” NOFAS estimates that 40,000 (or 1 in 100 infants) are born with some type of preventable damage from prenatal exposure to alcohol. That is a population larger than those with Down syndrome, cerebral palsy, and spina bifida combined.

There are many benefits that would naturally result from inclusion of FASD in the DSM:

  • Increased awareness of FASD among those that work in the mental health field, such as psychiatrists, psychologists, therapists and counselors.
  • Increased global awareness of FASD in all healthcare and human services systems of care.
  • Better accuracy in the actual numbers of FASD cases treated.
  • Increased motivation to intervene and treat women with addictive disorders.
  • Increased efforts to prevent FASD.
  • Enhanced services for individuals with FASD.
  • Increased knowledge of pharmacological and other interventions that are successful for individuals with FASD.

Having a DSM code for FASD may result in a domino effect. The more cases that are identified, the more healthcare professionals would become aware of the disorders, and then the more likely they are to understand the importance of prevention.

Certainly, individuals with FASD and their families are receiving services; they are in our systems of care. The question becomes: Are they receiving the correct services? As most individuals are undiagnosed or misdiagnosed, unfortunately, the answer becomes: Probably not. Those administering of our systems of care just do not know what they do not know!

This is such an important advocacy effort that this committed group of physicians has taken on. I honor Dr. Rich for her commitment to making a difference in preventing FASD, Dr. Peele for his support and enthusiasm, Dr. O’Malley for his brilliance, expertise and desire to help those with FASD, and NOFAS members for having the insight to understand the importance of supporting this effort. As always, this is a personal effort for me, as I see it as a way to help other families struggling to help their children.

Kathleen Mitchell is the vice president and national spokesperson for the National Organization on Fetal Alcohol Syndrome (NOFAS).

Your voice is important!

You can help this effort to include FASD in the DSM by contacting your local Psychiatric Association, and by sending a letter to the president of the American Psychiatric Association expressing support for inclusion of FASD in the DSM. Dr. Susan Rich is compiling personal stories and letters from families, researchers and advocates to share with the committee that will be studying the issue. If you are interested in contributing, please write a description of the mental health issues and challenges your family member has experienced, along with the tribulations of not having an accurate diagnosis, and email it to Dr. Rich at srich@cnmc.org. Please use “FASD in the DSM” in the email’s subject heading.

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Prenatal Alcohol Exposure Research in the early 1900s

by Katy Jo Fox

The discovery:

I have been a member of FASlink (a ListServ for issues relating to Fetal Alcohol Spectrum Disorders) for eight years now, and every once in a while something will be posted that completely astounds me. This past January was one of those times. A wonderful Canadian gal named Claudia, doing online research into women's drinking habits pre-1950, stumbled upon a book with a most interesting photo (see below) introducing one of the chapters. She sent the link over FASlink so that we too could see it.

Babies Die When Mother is a Drunkard. Out of Every 100 Children, 24 die when mother is sober, 33 to 72 die when mother drinks.

Babies Die exhibit: The Chicago Child Welfare Exhibit; 1911. Photographer unknown.
Courtesy of the Chicago Historical Society.

My quest:

I had to know more about this photo. The credits were given to the Chicago Historical Society (CHS), so that is where I started. I emailed them asking for more information. While I waited for a reply, I slowly enlarged the picture so I could somewhat make out the first three of the four words under the logo in the upper left-hand corner: Chicago Child Welfare. I went to Google.com to search for that organization. The results delivered that final word: Exhibit. I started surfing through the links and found a book titled "The Child in the City; a Series of Papers Presented at the Conferences Held During the Chicago Child Welfare Exhibit." Harvard had a scanned copy of this book online, and I was thrilled to see the logo on its front page. Some rather historical figures stood out in the table of contents, including Jane Addams and Booker T. Washington. Unfortunately, there was no mention of alcohol and mothers who drink in this book. Another link told me a bit more about this exhibition—a quarter million people attended, more than an eighth of Chicago's population at that time.

I emailed CHS, told them what I had found, and asked for confirmation that this photo was from the Chicago Child Welfare Exhibit. CHS confirmed that it was, and that it is now part of a collection of photos the society has from the exhibit. They did not know any more about it, but did say that the exhibition took place May 11-12, 1911. They did some research and found a page showing entries for the exhibition in the Chicago Record Herald, and mailed me a copy of that page. Unfortunately, the clipping did not help my quest. A few weeks later, a larger, scanned version of the picture arrived from CHS. I enlarged it further, but was unable to read the small writing below the three pictures on the left. However, I could see that the first part of the word on top of those pictures read “Feeble-M," and that the pictures were not taken at a jail (although they looked like mug shots).

I kept searching for other angles on Google. I started at the beginning, the online book I found the picture in, titled: “The First Measured Century.” It is a reference volume for a 3-hour PBS special of the same name. As I searched for the exact site, I came across a transcript of a discussion on "Infant and Maternal Mortality: How Julia Lathrop and the Children's Bureau Tried to Save the Babies." Unfortunately, the Children's Bureau was established in 1912, following the exhibit. A search on Julia Lathrop herself amazed me. Julia lived at Hull House with Jane Addams, and one of her jobs involved visiting over 102 almshouses, farms and settlements in and around Chicago that collectively housed the mentally ill, aged, sick and/or disabled. She also helped found the first juvenile court in the United States in 1899, and even established a psychiatric clinic for young offenders. Julia wanted to prove that mental illness was not a sign of moral defect, a belief that was counter to common opinion, even among those in the medical field. Later in life, she focused her work on combating infant mortality. Here was a wonderful woman who did all kinds of statistical research, whose CV would have been just as long or longer than Ann Streissguth's, FASD’s pioneering researcher, and who had all the qualifications needed to do the kind of research seen on this picture. More importantly for my quest, she had been doing research prior to 1911.

In my hunt for information on Julia Lathrop I came across an article by Dr. Patrick Curtis titled, “The Beginnings of Child Welfare Research in the United States.” It compared Julia’s belief about the cause of mental illness to those following a different path, specifically, eugenic reformers. They believed that so-called moral defects, like drunkenness, were passed down to their children, in the form of “feeble-mindedness” and delinquent behavior. I had a hard time explaining to someone the difference between this belief and Julia’s, especially when applied to drinking during pregnancy, since alcohol was the teratogen that caused the damage, and the mother was the person who actively drank it. I developed this hypothetical scenario as a way of explanation: Say female subject A was a “loose woman,” — definitely a moral defect for this time period. She got pregnant and had a baby girl who, later in life, turned to prostitution and crime. Was this just a reflection of her environment, or was this because she was predisposed to moral defect? Would it make a difference knowing she was prenatally exposed to alcohol? Today we have the ability to scientifically go out of the box. We know what alcohol does to the brain, causing people prenatally exposed to it to be more vulnerable and making them easy targets to the whims of criminals. Bless Julia Lathrop for believing in something that could not then be proven!

Another source of information about the Chicago Child Welfare Exhibit was “Childhood and Child Welfare in the Progressive Era,” by James Marten, which had several chapters about the exhibit and highlighted the work of Julia Lathrop. Unfortunately, the book contained no clues about the research presented on the exhibit poster. However, it did cite a booklet titled “The Child in the City: A Handbook of the Child Welfare Exhibit at the Coliseum, May 11 to May 25, 1911,” published in 1911 by Blakely Printing Co. in Chicago. Although Google could not help me track down this publication, I was able to find and email James Marten, who told me that it was available through Interlibrary Loan. I was quite excited when, a few weeks later, the handbook was available at the library. Skimming through it, I looked carefully through the names of various speakers and committee members. No mention of Julia Lathrop. I then skimmed through the various descriptions of demonstrations, everything from Chicago’s Open Air School, which turned “sick school children into stout and clever ones,” to how to sterilize baby bottles. The descriptions were quite vivid. The previous year, 3,500 children died in Chicago from preventable diseases. One display had a line of dolls, where every fourth doll dropped into a grave--only three in four infants grew up. Every aspect of the child’s life was examined, and recommendations aired.

I started to read the section titled “Eugenics,” and by the end I knew I had found the source for this picture. It discussed the need to scientifically look at mental and physical disabilities, and asserted that many of these disabilities could be prevented and that “the responsibility for these ills rests with the parent, the community, and the state…the policy of silence and suppression of information must be abandoned…that condemnation and prohibition must give place to education.”

I was happy to see that it looked like the theory of eugenics was in for a paradigm shift. Alas, it was too much to hope for. They were only at the beginning stages of this shift. Instead of using their knowledge to warn women about the dangers of drinking during pregnancy, they clung to their cloak of supremacy in breeding. As much as this quote sickens me, I have to share the last paragraph of this section, as it completes my quest:

“Infant mortality as a result of early marriages, strong drink, overwork and work in certain industries—the manufacturing of lead products, for example—are shown by statistics. The ravages of diseases are similarly set forth. A strong argument for preventing the mating of the unfit is made by chart and photograph illustrating the heredity of feeble-mindedness.”

Thoughts on "what went wrong":

If Iceberg readers are like me, they might be wondering why these statistics are in archive form only. Regardless of the researchers’ personal beliefs, if they knew without a doubt that babies died when their mothers drank (remember, there were then no resources for keeping failure-to-thrive babies alive), and they knew that those babies who did survive childhood grew up to have Neuroses (depression), drug and alcohol habits, and criminal tendencies, why was this research buried and forgotten? Perhaps it is because with the invention of immunizations, fewer babies were dying. Perhaps with WWI and then the Great Depression, people had other concerns and it was slowly forgotten. Perhaps it is because the alcohol industry found a way to suppress this information, or maybe even society itself was in denial that a once again legal drink could have such a harmful effect on offspring.

Interestingly enough, this question is one of the main topics in a 2003 book titled “Conceiving Risk, Bearing Responsibility,” by Elizabeth M. Armstrong (for those looking for a good book on Fetal Alcohol Spectrum Disorders, I absolutely do not recommend this book). Ms. Armstrong has a number of misguided notions (such as Fetal Alcohol Effects being a lesser form of Fetal Alcohol Syndrome) and the more I read her book, the more frustrated I became at her lack of accurate and updated research, which was reflected in her conclusion that FAS was more a diagnosis of the birth mom than brain damage that may not even be noticed (without brain imaging, which she also had a problem with) until adolescence. However, the first part of this book does have an excellent historical analysis, from Plato to the present, for those interested in the changing thought process on the visible effects of alcohol on offspring. Again, her ideas that these were not really a historical analysis on prenatal alcohol exposure, more a refection on morality, may not be totally accurate.

One bit of research mentioned in Ms. Armstrong’s book was a study done in a Liverpool prison where William Sullivan studied siblings of alcoholic mothers. He found that the children the mother carried in prison, without access to alcohol, fared better than their siblings carried out of prison. Morality could not have been an issue in this study as the children all came from alcoholic mothers who at one time or another spent time in prison.

Going back to the issue why this information was lost, Ms. Armstrong does ask the question of why the research of many doctors from around the world involving alcohol in pregnancy seemed to disappear. Her thoughts are that, in the age of medicine and scientific research, doctors thought that the studies of the past were not based on accurate research. Also, after WWII, most doctors in the U.S. did not want to accept any past research based on concepts of morality or the supremacy of offspring. It is quite possible that she is correct, as all other countries that had researched alcohol and pregnancy were directly affected by Hitler’s ideology.

There are many other questions one can ask when looking into the past. Did the research presented on the poster generate any prevention campaigns? In Ms. Armstrong’s book there is a poster from a 1909 anti-saloon billboard that asserts one can’t drink liquor and have strong babies. The language in the rest of that billboard is pretty strong and probably was viewed as more irrelevant ranting from groups determined to close down all sources of alcohol, rather than accurate scientific research. Was the research in this poster seen as irrelevant ranting from people determined to better the gene pool? We may never know the impact this poster had on those who saw it. We may never know how far these eugenic reformers took their research and conclusions. We may never know who exactly funded this research and who carried it out (for those interested, the handbook did list the names of people in the sub-committee on eugenics for the Chicago Child Welfare Exhibit ). We can only say thank you to those who rediscovered the harmful effects of drinking during pregnancy – Dr. Paul Lemoine and Dr. Ken Jones (and be glad that they did not attribute it to moral defect) – and thank you to all who have devoted their lives to researching, diagnosing and working with those who have Fetal Alcohol Spectrum Disorders, as well as everyone working towards prevention.

Katy Jo Fox is the Web master and office assistant for the Fetal Alcohol and Drug Unit at the University of Washington in Seattle, and an Iceberg board member.

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Response to "Getting FASD in the DSM: The Work of a Few Good Doctors"

by Charles Huffine

It was a pleasure to read Ms. Mitchell’s article and realize once again the power of parent advocacy. I, too, have labored for reform in the Diagnostic and Statistical Manual for Mental Disorders (DSM) and have come to realize how slow and conservative the American Psychiatric Association is in allowing change. My position is slightly different than Ms. Mitchell’s.

We need to keep in mind that a psychiatric diagnosis accompanying a medical problem needs to be separated out for inclusion in the DSM. Fetal Alcohol Spectrum Disorders (FASD) would never be considered a psychiatric diagnosis per se, only the brain functioning part of that diagnosis and not the dysmorphology. I would advocate for Alcohol-Related Neurodevelopmental Disorders (ARND) to be the psychiatric diagnosis. Interestingly there is a possible code for ARND buried deep in the schedule of diagnoses: DSM IV, Axis I, 310.1 Personality Change Secondary to (X Medical Condition). The text of the DSM specifically says that the personality change can be the difference of what the child’s personality might have been had the child not had damage in-utero. The medical condition is Fetal Alcohol Exposure.

This is a confusing and underused diagnosis. I have found very few who use it even in my community where I have been advocating for its use for many years. ARND would be a much more specific diagnosis and would challenge the FASD community to carefully define it with criteria that distinguishes it as a distinct diagnosis. I would code it next to Personality Change Secondary to (X medical condition) as 310.2.

I have earlier written for Iceberg on the importance of having the psychiatric issues of FASD specified in the DSM as a means of helping psychiatrists avoid throwing them into the amorphous and much-maligned pool of Conduct Disorder and the other Disruptive Behavior Disorders. (Huffine, C. “It’s Time Psychiatry’s Diagnostic “Bible” Addresses FAS, Iceberg June 2000.) I hope, in time, that this will be the case.

Charles Huffine has practiced child and adolescent psychiatry in Seattle, Washington since 1975. He is currently in private practice and is the Assistant Medical Director for Child and Adolescent Services at the King County Mental Health, Chemical Abuse and Dependency Services Division.

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What You Can Do to Support Students with FASD

by Wendy Olson

I am a Special Education Teacher, and when asked to comment on how to teach kids with disabilities, I often wonder what would be helpful to others there in the trenches. Working with children who are affected by Fetal Alcohol Spectrum Disorders (FASD) is tough. Period. There are days when I can feel like I get little return for my investment, as progress takes time, determination and a lot of repetition.

Then I think of my students and how we really do have little victories every day. Just this week, we celebrated a first 100 percent spelling test taken by one of our students who is Fetal Alcohol Effected (FAE). There are small and often unrecognized signs of progress. After reminding a child with ADHD not to climb on the counters (again), she looked up, smiled sweetly and declared fervently, “I will learn it!” My students often humble me with their positive outlook.

I’m a pragmatic individual. I don’t spend a lot of time belaboring theory. Much of what I have learned comes from good, old-fashioned trial and error. Research is important, so long as you use it to inform your practice. In other words, what interests me is what I can do to help my students today. What follows are the ways I try to position my students for success.

Providing structure

I arrange my classroom with the specific needs of my student population in mind. There should be no clutter; I avoid hanging anything from the ceiling, and only gradually introduce the idea of displaying student work on the back walls (usually not before January).

I break the room into areas, each with a specific function and all visually separate from the rest of the room. For example, large tables for group work are sectioned into individual spaces using colorful electrical tape, which is necessary when working with children who struggle with knowing where they are in space and therefore tend to encroach upon others.

My students also often have problems with sensory integration, and may be sensitive to visual, auditory or tactile input. We try to keep the noise level down whenever possible. Turning off a few lights and playing soft music can really help. In the past, I have provided particularly sensitive children with construction headphones to block out sound. But some students need input, so such a child can hold a Koosh ball while listening to a group lesson (keeps those busy hands from peeling the nametags off desks). Giving directions in sign language while speaking them can give additional helpful input to children with auditory processing issues.

When properly supported in a structured environment, even the most profoundly affected children can learn appropriate school behaviors. Visitors have commented that I have the best-behaved classroom in our primary unit. When asked about what I use for a behavior management system, I always answer, “structure.”

Structure can be applied to any activity, while allowing for choice and freedom. When I first tried a free-choice math activity period, we had nothing short of chaos, even though I had carefully outlined which activities were available. So I tried upping the level of structure by laying out each activity in a different area and placing carpet squares where students could choose to be.

Now, before we begin an activity like this, I stop at each area, show the activity, and ask students how many children may be in that area. By looking at the carpet squares, they know if two or four may play. With the simple addition of visual structure (carpet squares), they are able to choose an activity and manage themselves with a fair degree of independence.

Focus on the positive

While structure is key, positive behavioral management is critical. Simply stated, you focus on the good stuff and try to give minimal attention to the bad stuff (unless safety is an issue, of course). The problem comes when we insist upon delivering a punishment (often not even a natural consequence), thereby putting our attention in the wrong direction.

It is important that we as educators remember that behavior serves a purpose: it is communication. Before you try to stamp out a behavior, step back and ask yourself: “Why is my student doing this? What is the purpose?” You’ll need to teach an appropriate replacement behavior that gets the child what he or she needs if you wish to extinguish a problem behavior.

When thinking of recognizing the positives, praise is not enough. There should be a reward system in place. After all, we all expect a paycheck when we go to work and school is a child’s work. In the best of all possible worlds, feedback is immediate and tangible.

In my room, I use classroom money that an old friend designed for me. Our Buckaroonies are given out for hard work, good behavior and kindness towards others. Throughout the day, my paraeducators and I give out money to students who are on task. Children who are not working are skipped over without comment, as we quietly tell the other children, “Thanks for your hard work.” It is amazing how quickly that off-task student will pick up his pencil and get busy.

Hands-on, real life experiences are critical for children with FASD. Students in my classroom are expected to manage their own money. They earn additional funds by doing classroom jobs, and are paid for these by check on the first and third Fridays of the month. Every Friday, we have “Store” instead of math. I expect students to sort out their cash by denomination, count it and decide whether or not to cash their paychecks, which must be endorsed.

The store is actually a rolling set of plastic drawers with items arranged by price. Students may purchase books, school supplies or educational toys with the money they have earned. This is a good opportunity to practice social skills, as children are often upset when they can’t afford an item or someone else buys what they had hoped to have for themselves.

Engage the students in their own education

When children are supported properly with the right degree of structure and positive behavior management, they are ready to be active participants in their own learning. I make a point of talking to them about IEPs (Individual Education Plans). Whether my students can read or not, I show them the goals that their parents and I agreed we would work on this year. We talk about individual progress, and familiarize them with the data sheets in their binders.

Often times, students participate in data collection by counting the number of flashcards they read correctly, or helping to calculate a percentage by punching numbers into a calculator (with some assistance). I ask them to look at their scores and tell me if they did better than yesterday. When an IEP objective is met, my students receive a certificate to take home and get congratulations from their peers.

Educating children with FASD is a challenge, but it is also a gift; I learn so much from my students! When structure and positive behavioral support are provided and students are actively engaged in their own learning, I like to think they learn from me, too.

Wendy Sunderland Olson is a Special Education Teacher working for the Edmonds School District near Seattle, Washington. She has a B.A. in special education and a M.Ed. in severe disabilities. Previous to teaching, Mrs. Olson worked as a research coordinator for the Fetal Alcohol and Drug Unit at the University of Washington. She is currently in her fifth year of teaching in a self-contained special education classroom serving children with FASD, Autism Spectrum Disorders, developmental delays, and health impairments.


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