September 2001

• Researching the effects of alcohol in utero
• Recent research highlights
• SCREAMS: A parent's sweet sound of success
• Book & video: Journey Through the Healing Circle
• Dr. Sterling Clarren honored for FAS research
• Grant aims to "prevent double jeopardy"

Researching the effects of alcohol in utero

by Jennie Little, Ph.D.

As a post-doctoral research fellow in the Fetal Behavior Research Center, based at the Royal Maternity Hospital and School of Psychology, Queen's University, Belfast, Ireland, my research examines neurobehavioral functioning in fetuses exposed to relatively low amounts of alcohol during pregnancy (approximately 4-5 drinks per week or less).

My interest in the prenatal period stems from the fact that this is the time the building blocks for later development are established, and any adverse experiences at this time may last a lifetime. The behavior of the fetus is widely considered a direct reflection of central nervous system (CNS) functioning and integrity because we know that fetuses with CNS deficits display an altered behavior pattern compared to normal, healthy fetuses. Therefore, fetal behavior may be used to assess CNS functioning at the time when alcohol is actually exerting its teratogenic effects of the developing fetus.

To date my work has found differences in the behavior of fetuses exposed to alcohol compared to those of mothers who have abstained from alcohol during pregnancy. Fetuses of mothers who drink alcohol exhibit deviant spontaneous behavior—fetal movements such as general body, breathing, mouthing and startle movements and hiccups—and in their elicited behavior (their responses to stimuli_ they display altered patterns of responding. However, not all fetuses appear to be equally affected by similar levels of alcohol exposure. I am presently attempting to use the behavior of the fetus as a means of identifying those fetuses most at risk from the teratogenic effects of alcohol.

At the present time in the United Kingdom pregnant women are told that it is safe to consume up to four units of alcohol each week (1), despite the fact that we do not know how much alcohol is safe to drink during pregnancy. Women receive mixed messages from health professionals, some of whom advise complete abstinence from alcohol, whilst others tell mothers it is fine to have a few glasses of wine. In order to address this discrepancy, Northern Ireland Mother and Baby Action (the charity that funds my research) recently created an information leaflet targeted at pregnant women and women planning to conceive. This leaflet, Alcohol and Pregnancy: The Facts, was launched at all maternity units throughout Northern Ireland. In addition, two seminars were organized for health professionals in an attempt to increase awareness of the very real risks associated with alcohol consumption during pregnancy.

I believe that it is our responsibility as researchers to ensure that the results of our work reach women and other health professionals. It is vitally important to educate health professionals and women on the adverse effects of maternal alcohol consumption on the developing fetus, and the life-long consequences of drinking alcohol whilst pregnant.

(1) In the U.K. a unit refers to the amount of alcohol the body can metabolize in one hour. So, 1 unit of alcohol equals a half-pint of lager or cider, one glass of wine, or one measure of spirits.

return to top

Recent Research Highlights

by Helen Barr

The 24th Annual Scientific meeting of the Research Society on Alcoholism (RSA) was held the last week of June in Montreal, Quebec, Canada. The 7-day conference covered topics of genetics, and of effects of alcohol on neurophysiology, neurotransmitters (adults and the unborn), behavioral pharmacology, endocrine and immune systems, human alcohol intake, clinical issues of diagnosis and treatment for problems with alcohol use, public health issues, relationships of alcohol to HIV and suicide, customization of treatment strategies, alcohol advertising, and of course, teratology of alcohol. Some highlights of the conference:

The physiological effects of prenatal alcohol consumption

This year's RSA meetings advanced our knowledge about how in the mother, alcohol alters thyroid-related responses and influences maternal circulating cortical (a stress hormone), both of which can effect the unborn child. In the unborn, prenatal alcohol exposure causes very real alterations to fetal brain development. Numerous presentations documented how prenatal alcohol exposure inhibits creation of brain cells in the developing fetus, directly kills some, and causes others to die before they are supposed to. Other research expanded on our knowledge of how prenatal alcohol alters neurotransmitters in the unborn. Fetal Alcohol Spectrum Disorders (FASD) are truly birth defects.

How common is FAS?

A 1997 publication from the Fetal Alcohol and Drug Unit in Seattle estimated that almost 3 per 1000 newborns in Seattle metropolitan area probably have FAS and that the combined incidence of FAS/FAE approaches 10 per 1000.

One research group attending this year's RSA conference reported results from a screening of the entire school enrollment of a community in South Africa where drinking among women is known to be prevalent. They found about 48 in 1000 to have FAS (with the facial features).

Another group reported on studies of alcohol use and consequences in Russia, the country that is believed to have the highest per capita alcohol consumption in the world A Russian team that was recently trained in diagnosis of FAS, examined children (age 6-18 years) living in special orphanages and boarding schools in Moscow. They identified about 100 in 1000 as having FAS.

What influences people to drink?

It was reported that the alcohol industry spends over $1 billion in advertising each year in the U.S., using such venues as TV, magazines, billboards, kiosks (such as seen at shopping malls) and radio. Several studies were consistent in the finding that this advertising does appear to be correlated with increased drinking in young people, but that the effect is "small". One wonders though: if the effect is present (even if small) in a largely normal sample, what effect does this advertising have on individuals who are born with brain damage that manifests in high suggestibility and poor judgment – especially when the advertisements tell them that when they drink they will be happy, socialize easily, have good times, and have friends?

Several studies concluded that expectations about drinking are already observable in young children, and that appropriate expectations about drinking can help mediate the effects of alcohol advertising.

Teaching children how to be happy, socialize, have good times, and have friends without alcohol appears to be an important and empowering tool against the alcohol advertisement dollar. If parents don't teach their children about alcohol, their environment will.

What about treatment for problems with alcohol among the young?

The 1999 RSA meetings presented a forum for several groups independently concluding that the traditional 12-step programs successfully used by adults do not work as well for younger people due apparently to their identity-development issues. This year's meetings presented several encouraging experiments with customized "young-people's treatment" that show more promise.

For more information about the conference, call 206-543-7155.

return to top

SCREAMS: A parent's sweet sound of success

by Theresa Kellerman

I'll never forget the day that I first realized the success I had achieved as a mother of a young adult with FAS. When the light of awareness went on in my mind, it was bright in contrast to the darkness I had been carrying for years. I had been somewhat depressed over the hopelessness of the idea that FAS is permanent brain damage. What made this concept so devastating is that it is 100% preventable – theoretically speaking, anyway.

My son John had just turned 18, that magical age when a person legally becomes an adult. But I knew that he really was, and always would be, a boy in a man's body, never able to function independently in the true sense of the word. He would always need supervision and support services. I had tried so hard all his life, worked so diligently, to help him achieve his potential, and it was hard for me to accept that, in spite of all my efforts, he would always need to be in the care of others to stay safe and well and living within a decent quality of live.

When I started my journey as John's mother, I was a foster parent for special needs babies, and John came to me a scrawny little thing a few weeks after his birth, at only 4 pounds, with a diagnosis of FAS. As delighted as I was to have a diagnosis, it was not long until I learned that there was almost no information available regarding prognosis or intervention. His future was a big question mark, and I realized I might have to rely on my "whatever works" philosophy of intervention. After I adopted John, I followed Dr. Ann Streissguth's continuing studies on children and adolescents with FAS, and that helped me to know what behaviors to expect and what problems to try to prevent. As other parents know, day-to-day life was challenging, sometimes joyful, sometimes frustrating. And as John reached adulthood without the abilities to live as an adult, I felt discouraged that nothing I could do for him would reverse the physiological damage of FAS. Until my "awakening" to a new reality.

It was a September day in 1996 that Dr. Streissguth revealed the results of her long-term studies on secondary disabilities associated with FAS disorders. I was sitting in the auditorium in Seattle with other conference attendees. Streissguth noted the primary disabilities associated with FAS—the delayed growth, the facial characteristics, the physiological anomalies, and the dysfunction of the central nervous system. I recognized that John had just about every primary disability that was mentioned. Then Streissguth talked about the secondary disabilities that the individuals in her study developed: mental health issues such as clinical depression that in 23 percent of adults led to suicide attempts; dropping out or getting kicked out of school; getting in trouble with the law; sexually assaulting others, abusing alcohol and other drugs. These are among the secondary disabilities that can result from FAS disorders – more devastating than the primary disabilities, and all preventable! It was at that moment that I realized that John had reached the legal adult age of 18 without having incurred any of the secondary disabilities. Streissguth reported that the protective factors include early diagnosis, stable home environment, and appropriate support services. John came to me with the first, and I provided the others. I felt such joy and pride that I must have done something right in raising John to have helped him get at least this far in his life with absolute success!

The strategies I had been using all the years John was growing up were not just haphazard ideas applied blindly. They were carefully thought out strategies based on what I had leaned from Streissguth and other FAS experts. There was a method to my madness, and that method was something I decided to record and distribute for other parents to use as guidelines in helping their children achieve success as well. My model for intervention has been used by many other families with great success, according to feedback I have received.

There are seven basic components that I apply, and they happen to form the acronym SCREAMS.

Structure: a regular routine with simple rules and concrete, one-step instructions

Cues: verbal, visual, or symbolic reminders can counter the memory deficits

Role models: family, friends, television shows and movies that show healthy behavior and life styles

Environment: minimized chaos, low sensory stimulation, modifications to meet individual needs

Attitude: understanding by everyone that behavior problems are primarily due to brain dysfunction

Medications: many individuals can increase control over behavior with the right combination of medications

Supervision: 24/7 monitoring may be needed for lifetime due to poor judgment and lack of impulse control.

Many people who know about FAS disorders are aware of the need for structure, but sometimes this is confused with control. While providing structure as a foundation, we need to offer choices they can handle, remain flexible, and remember K.I.S.S.—Keep It Simple, Sweetie!

Giving cues can be tricky, as we tend to give only verbal reminders. I call it cueing; John calls it nagging. Kids with FAS respond well to visual cues, to symbols and signs, to music and rhythm.

Children with FAS disorders learn behavior primarily by mimicking the behavior of others. This makes healthy role models extremely important. I am reminded of this saying: "Children learn by example; unfortunately they can't tell a good example from a bad one." We need to provide positive examples for dealing with frustration and anger, for appropriate social interactions, and for life styles that are healthy. Our kids need to be shown how to act in ways that will keep them out of trouble. John learned to walk away from being shoved or hit. He learned to express his anger with words that explain what he is feeling rather than words or actions that might hurt others. When we observe unhealthy behavior, like inebriation or violence or disrespect, we talk about it and we play-act healthy reactions to difficult situations that are likely to occur.

Behavior modification is not on my list, because it has not been provided to be very effective when dealing with my son's behavior. Our kids might understand consequences, but they aren't necessarily able to learn from them. What works better for our kids attention to the environment. Timeout may not teach them to change their behavior either, but quiet time can be used when they are overwhelmed or over-stimulated as an opportunity to self-calm before rejoining a group. Avoid noisy, crowded places; reduce the chaos; and prepare in advance some coping strategies for unavoidable situations that might be too stimulating.

Understanding the nature of FAS as a neurological disability helps to minimize unrealistic expectations. Dr. Calvin Sumner stated that the greatest obstacle our kids must overcome is chronic frustration from unreasonable exceptions of others. I believe this attitude of understanding by all who are in the individual's life could reduce the risk of depression and suicidal tendencies later. The parents whose children experience the most success are those who have achieved an attitude of acceptance that their child may not fulfill their dream of "normalcy." Again, unrealistic expectations for full independence might set the teen up to fail. The teens and young adults who enjoy the most success are those who have accepted the limitations of their disability and the need for protective restrictions.

Medications are usually initially prescribed for ADHD, but meds can help more than just reduce hyperactivity. In my experience, the right meds or combination of them can normalize the balance of brain chemicals, and can somewhat restore function and give the individual more control over behavior, increase learning ability, and enable the individual to function more appropriately in social interactions.

Supervision is difficult to impose, especially as the child reaches the teen years and wants the same independence they think their peers are given. Unfortunately, giving privileges due to an 18-year-old to a person with the judgment and impulse control of 6-year-old could result in total loss of freedom, if they end up in the hospital, on the streets, in jail or in the morgue.

I have overcome criticism of being overprotective and of not letting go. My son is healthy and happy and productive, and I am proud of the success he has achieved. His quality of life is better than that of most non-disabled people. The only scrams in our family are scrams of excitement and joy. Especially now that John is pursuing a romantic relationship with a new female friend. But that's another story!

Teresa Kellerman is the founder and coordinator of the FAS Community Resource Center in Tucson, Arizona. She conducts workshops on FAS disorders for parents and professionals in her community, and presents on FAS at training seminars around the country for the U.S. Department of Justice Drug Court Program and the Native American Alliance Foundation. She can be reached at tkellerman@mindspring.com or through her Web site at www.come-over.to/FASCRC.

return to top

Journey Through the Healing Circle

Dr. Sterling Clarren honored for FAS research

The University of Washington's Sterling K. Clarren, M.D., was honored with the Rosett Award at the adjunct meeting of the Fetal Alcohol Study Group at the Research Society of Alcoholism's annual meeting in Montreal. Henry Rosett, was an addictions psychiatrist who did important early work in the mid-1970's on offspring of heavy-drinking mothers in Boston. He died prematurely and in his honor the FAS Study Group initiated an annual award to honor an outstanding FAS researcher. On June 23, Dr. Clarren was so honored for his many contributions to the field, including his important primate studies on offspring effects of prenatal alcohol exposure.

return to top

Grant aims to "prevent double jeopardy"

The Parent-Child Assistance Program (P-CAP) at the University of Washington in Seattle has recently received funding from the March of Dimes Washington State Chapter for a project called "Prevent Double Jeopardy" that will provide services to women with FAS/E in order to prevent more cases of FAS. Women who themselves have FAS/E and become pregnant have a high likelihood of drinking during pregnancy and producing yet another generation of children who are also damaged by prenatal alcohol exposure. The March of Dimes $24,869 gift will allow a P-CAP clinical social worker to educate community providers about FAS, and to develop specialized strategies to help those affected access and utilize even the most basic services.

The March of Dimes was the first professional organization to recommend not drinking during pregnancy and initiated the first stat network of FAS diagnostic sites in Washington in 1994. More people are now being diagnosed with FAS, but their needs go unmet because community service networks are unfamiliar with the unique characteristics, capabilities and requirements of these people as adolescents and adults.

P-CAP, in the UW School of Medicine's Department of Psychiatry and Behavioral Sciences, Fetal Alcohol and Drug Unit, is an award-winning intervention model. The program has proven to be highly effective in intervening with pregnant and postpartum mothers who abuse alcohol and drugs so that their children will not be prenatally affected by these substances.

For more information, call Dr. Therese Grant at 206-543-7155.