June 2003

• FAS/FAE community loses pioneer advocate
• From the editor: A change for Iceberg
• Welcome: New editorial board members
• The FASD Center for Excellence: FASD momentum at the national level
• The value of psychotherapy for adults with fetal alcohol spectrum disorders

FAS/FAE community loses pioneer advocate

by the Iceberg Board

Jean Dale Leuthold, the first editor of Iceberg, died March 1, 2003. Her memorial service was a time of sadness at the loss of such a talented woman, but also a celebration of her many talents, her vision, and her determination.

Dale was not only the first editor but also the energizing force behind its inception. The adoptive mother of a young child diagnosed with fetal alcohol effects, she was aware of the great lack of information on FAS/FAE and determined that a group of us should organize and do something about it.

In 1989, the publication of The Broken Cord by Michael Dorris brought instantaneous attention to the problems that parents of children with FAS/FAE were having—trouble finding help, services, and diagnosticians for their children. Two events propelled queries to Seattle regarding help for these children. Ann Streissguth was prominently listed in The Broken Cord as a source of FAS information, and the next year, a 20/20 program on ABC-TV featured Michael Dorris and his son with FAS, as well as Sterling Clarren and Ann Streissguth.

Between spring of 1990 and mid January 1991, the Fetal Alcohol and Drug Unit at the University of Washington received over 600 letters from individuals and families across the country and Canada. They all contained the same basic message: “Please help us with our situation. We are desperate for information in dealing with FAS/FAE.”

Dale Leuthold repeatedly urged us to organize, and in 1990, a small group of us in Seattle formed a nonprofit organization called the Fetal Alcohol Syndrome Information Service (FASIS) in order to publish the first newsletter (that we are aware of) on FAS/FAE. Dale was the founding editor who essentially taught us how to do it—and did a lot of it herself.

The Editorial Board consisted of Sterling Clarren, Diane Davis, Richard McKenzie, Peter Petrakis, Sandra Randels, Ann Streissguth, Marceil Ten Eyck (Vadheim), and Barbara Von Feldt (O’Hara).

Dale chose the name “Iceberg, an Educational Newsletter on Fetal Alcohol Syndrome (FAS)and Fetal Alcohol Effect (FAE)” and designed the first Iceberg logo. In her first editorial statement in Issue Number 1 of year Number 1 (February 1991 ), Dale said: “The logo you see here symbolizes a concept that applies both to fetal alcohol syndrome/fetal alcohol effect (FAS/FAE) and to the powerful social, political, and personal ramifications that are associated with this disease. A small part of the problem is visible—but the bulk of the problem is obscured and hidden.

“[Iceberg] will be talking to, for, and about the problems and issues faced by children affected by prenatal exposure to alcohol and to the parents, families and others concerned about them. Our focus is simple. The problem is enormous and complex.

“We will provide accurate information facilitate formal and informal sharing of experiences … keep track of and inform readers about the political realities that influence the availability of services to FAS/FAE children … promote public awareness of the problem of FAS/FAE … salute public officials who support policies or services that are beneficial to the needs of FAS/FAE children … keep our readers informed about legislation on both local and statewide levels that influences services for these children … make all the information we are aware of available to FAS/FAE children and their families.

“Like an iceberg,the visible portion of the problem gives us warning of hidden danger. We are not sure of the extent of that danger. We don ’t know how big it is. We are sure the danger is real, but we are in the process of learning how to best use our resources and energies to fight it. We ask that you join us in this difficult task.”

Dale Leuthold was truly a pioneer. She was courageous, uncompromising,
and determined. She gave two years of her life to Iceberg as a volunteer editor, but never gave up her passion to educate and help families of children with FAS/FAE.

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From the editor: a change for Iceberg

by Tina Talbot

In the first issue of Iceberg, Dale Leuthold used the familiar saying “the tip of the iceberg ” as the perfect metaphor for FAS/FAE and its associated problems. Twelve years later, we asked ourselves, is this newsletter still needed? Isn’t much more of the iceberg now visible? Just look at the number of resources currently available—there is even a national FAS Center for Excellence (see article below). Perhaps our mission is complete.

We asked others what they thought. Some said when viewed worldwide, just the tip of the iceberg is still all we see. One commented that a little more of the tip may be “above the water,” but the bulk—effective treatments for FAS/FAE— is still underneath. Another agreed, saying we’ve just blown the soft snow from the top, revealing a new form with its hard core. Others said, yes, there are a number of resources, but by blending professional, research, and family perspectives, Iceberg offers a unique voice. So we found a way to carry on.

This issue marks the end of a subscription-based, printed Iceberg newsletter. In September, we begin our transition to a free, electronic format on the World Wide Web. We’ll maintain the quarterly publication cycle. Our Web address will be www.FASiceberg.org.

There is a certain irony in commemorating the passing of our first editor, the “energizing force behind Iceberg,” and deciding to carry on the newsletter in a different form. Only the format is changing, however. Our goals and values today are the same as those Dale defined in February 1991.

We believe that a Web-based newsletter will expand our readership. We see that it can more fluidly facilitate formal and informal sharing of experiences. And we have a few new goals, too. We know that the costs and time savings will be considerable, allowing us to continue producing a quality, quarterly newsletter without the constraints of eight pages and subscriptions and renewals to manage. Readers will be able to freely print from the Web-site as many copies as they wish. We hope that it eventually grows into a thriving, link-laden, interactive Web-site. So, though we won’t be taking subscriptions, we will welcome donations.

For those with current subscriptions, we will continue to send paper copies of the online newsletter until subscriptions expire. If you have online access and don’t need a paper copy, you can let us know by e-mailing us at iceberg_fas@yahoo.com.

Most public libraries have Internet access where you can print a copy. Those who can’t get the newsletter by way of the Internet can write us—we’ll try to put you in touch with someone near you who can.

Thank you for your support over the years. We’re excited about the new direction we’ve chosen. Look for us online at www.FASiceberg.org in September 2003.

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Welcome: new editorial board members

FASIS is pleased to welcome Paul Connor, Ph.D., and Heidi Connor to the Iceberg Editorial Board. Paul is a neuropsychologist researching the effects of alcohol on brain development. An article by him was featured in the December 2001 issue of Iceberg. Heidi is a technical writer whose Web skills should enhance our electronic publication immensely.

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The FASD Center for Excellence: FASD momentum at the national level

As is well known, there are over 42,000 babies born in the United States each year with FAS/E. Although many people are aware that FAS/E is 100 percent preventable, they may not know how to prevent it or how to help individuals and families who are already living with the effects of prenatal alcohol exposure. That’s where the Fetal Alcohol Spectrum Disorders (FASD) Center for Excellence comes in.

Authorized by the Children’s Health Act of 2000, Sec.519d (42 USC 290 bb-25 d), the FASD Center for Excellence strives to help prevent FAS/E and seeks to find better ways to treat people who already have FAS/E. Over the next several years, the center will focus on advancing the field and building state systems to address FAS/E. It will do so by serving as a national clearinghouse for information and resources and by promoting evidence-based prevention, treatment, and support programs.

The legislative mandates of the FASD Center are:

• Study adaptations of innovative clinical interventions and service delivery improvement strategies.
  
• Identify communities with exemplary comprehensive systems of care.
  
• Provide technical assistance to communities that do not have comprehensive systems of care.
  
• Train community leaders, professionals, and families on the implications of FASD and the need for early identification and referral.
  
• Develop innovative ways to prevent alcohol use by women in childbearing years.

The FASD Center was launched in October 2001 with funding from the Substance Abuse and Mental Health Services Administration (SAMHSA). Located in Rockville, Maryland, the center has fifteen full-time staff members.

FASD Center activities include the following:

Information Resource Center

The Information Resource Center (IRC) includes the FASD Center’s Web site, which will be expanded throughout the life of the project. It will include relevant knowledge regarding available programs and services, instructional material, and other information tailored to both public and professional audiences (fasdcenter.samhsa.gov).

In addition, a toll-free line is now available between 9 a.m.and 6 p.m.EST at 866-STOPFAS (866-786-7327). The IRC assists in providing general science based information on FASD and locating local and national resources available in the FASD community.

An inventory of FASD prevention and treatment programs and resources

The FASD Center is compiling a comprehensive searchable database of various resources, including prevention and treatment programs, scientific journal articles, newspaper and magazine articles, news-letters, practice guides, curricula, resource guides, reports, books, fact sheets, and electronic and print media. This is an ongoing effort throughout the life of the project.

The searchable database will be posted on the FASD Center Web site. The primary purpose of the inventory is to streamline national and community efforts by avoiding duplication and targeting limited resources toward the programs that are most needed.

Regional town hall meetings on FASD

In 2001, the National Task Force on FAS recommended that town hall meetings on FASD be conducted across the country. The Center for Excellence is carrying out this recommendation. The purpose of the regional town hall meetings is to systematically identify needs of affected individuals and their families and caregivers as well as effective community prevention and treatment strategies.

So far, town hall meetings have been held in Olympia, Washington; Denver, Colorado; Clearwater, Florida; Austin, Texas; Newaygo, Michigan; Chicago, Illinois; Anchorage, Alaska; Jackson, Mississippi; Los Angeles, California; and Rapid City, South Dakota.

Testimony from the town hall meetings brought to light numerous issues, not the least of which is the pain and frustration of trying to obtain services for children with FASD. As one parent said, “I don’t think my job should be an advocate ….My job is to be the mommy.” A draft summary report will be available on the FASD Center Web site soon.

Study on FASD initiatives in Native American communities

A review of service delivery systems for individuals affected by FASD was conducted in the ten largest Native American tribal communities and in five urban centers with large Native American communities.

Trainings

To date, the FASD Center has supported over thirty trainings and presentations throughout the United States and Canada. These trainings have been targeted to professionals, families, community stakeholders, and SAMHSA staff.

Curriculum review report

Forty-one curricula obtained to date concerning FASD prevention and treatment were reviewed to identify current gaps in content or target audience focus. The report will be posted on the FASD Center Web site.

FUTURE DIRECTIONS

One of the challenges in the FAS/E field is identifying “what works.” The FASD Center is now working to identify effective practices in prevention and treatment. This task is greatly limited by the small number of evaluated FAS/E prevention and treatment interventions. Therefore, the FASD Center will work to coordinate evaluation services for several of the longstanding prevention and treatment programs developed by family support and advocacy organizations.

The hope is to demonstrate the effectiveness of these “wisdom of practice ” efforts and place them on the level with other science-based programs so that they may be replicated nationwide.

A number of future activities for the FASD Center are described below. Some are already under way:

• Supporting a birth-mother network, including a Women in Recovery Summit in September 2003.
  
• Convening town hall meetings in 2003—May in Buffalo, New York; June in Washington, DC; October in Phoenix, Arizona.
  
• Convening “Building FASD State Systems,” a meeting of individuals from state agencies who are involved in FASD prevention and treatment. The purpose of the meeting is to review the state-of-the-art in addressing FASD and identify best-practice FASD coordination systems, mentor states that have only recently directed attention to FASD, and coordinate future state-level efforts.
  
• Providing technical assistance and training for individuals with FASD, service providers, and caregivers.
  
• Identifying promising practices in prevention, treatment, and community systems of care, such as events at summer camps.
  
• Identifying and facilitating FASD initiatives in Native American communities.
  
• Collecting information on federal, state, local, and tribal laws and regulations related to FASD to identify best-practice policies and barriers (e.g.,professional licensure training requirements, eligibility criteria for entitlement programs).
  
• Developing an inventory of relevant federal block grants to assess opportunities to establish requirements for inclusion of FASD education/interventions.

The FASD Center partners with the National Institute on Alcohol Abuse and Alcoholism (NIAAA) and the Centers for Disease Control and Prevention (CDC). These groups are represented on the Steering Committee. Other members include representatives from federal agencies such as the Department of Justice and the Department of Education, parent advocates, state agency representatives, and researchers. (See the FASD Center Web site for a complete list and links to Web sites.)

The FASD Center will continue to provide technical assistance and training, update the inventory, and disseminate information. Through these efforts, the FASD Center will strive to ensure a nation of healthy children, adolescents, and adults.

We welcome your comments and questions. For more information, contact the FASD Center for Excellence, 1700 Research Boulevard, Suite 400, Rockville, MD 20850, 866-STOPFAS (866-786-7327), http://fascenter.samhsa.gov.

Doreen Bonnett, M.S.W., is the senior writer for the Fetal Alcohol Spectrum Disorders Center for Excellence. She has been working in the field of substance abuse prevention for the past decade and has been writing and editing health related information for nearly twenty years.

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The value of psychotherapy for adults with Fetal Alcohol Spectrum Disorders

by Paul Estenson, Ph.D.

Most adults with FASD struggle with staying out of harm’s way. They regularly experience negative consequences because they have significant problems discerning information that is relevant to making an appropriate and safe decision. Also, adults with FASD tend to have difficulty correctly anticipating the probable outcome of a course of action.

The worries of parents of adults with FASD tend to focus on the ongoing likelihood of poor decisions and the unhappy outcomes that typically follow. Parents also share a deep concern about the limited social and occupational opportunities that exist for these young adults with FASD. Parental concern about these limited opportunities reflects a very real cultural and political problem.

Some young adults with FASD react to the problem of finding themselves in trouble by becoming passive and taking little initiative. Unfortunately, this approach makes them more dependent upon others and creates the conditions for a constricted, sparse life. Some young adults with FASD find themselves in a highly structured setting that typically offers too few choices and too constricted a range of experience. The most common such setting is the correctional system, a setting in which such young persons are particularly vulnerable.

What role can psychotherapy or counseling play in helping the adult with FASD cope with the problems that typically go hand in-hand with FASD? Despite the wonderful diversity of individuals affected by FASD, there are a number of common elements and directions that emerge. Combining these elements and directions as needed is the course of effective therapeutic work with adults with FASD.

Life coaching

Treatment tends to focus on what Barb Wybrecht, a Michigan public health nurse and advocate for children with FASD, has called “life coaching ”—an ongoing real-time reflection about events and choices as they occur. Much coaching is devoted to surveying the different areas of life, for example, work, social relationships,and personal habits,exploring how to discern relevant information, and providing input on likely outcomes of different plans of action. Keep in mind, however, that people do not always follow the advice of their coaches, and that coaches are not always right.

Using multiple sources of information about the person’s life

Acting as a coach can be challenging because many adults with FASD are not good informants about their interactions and their own behavior. Also, because adults with FASD often do not see problems coming, a conversation about “problems or potential problems ” may not be very useful. Inquiring more broadly about what is going on in a particular setting will likely yield more useful information.

Getting information from other sources, especially from parents who have known the adult over time, will lead to a much better sense of how things are going for the adult with FASD. Accurate, comprehensive, and robust information increases the likelihood that counseling or psychotherapy will help construct a positive life story for the adult with FASD, instead of serving as a format for the review of bad news.

Offering sustained low-intensity psychotherapy

An important complement to life coaching is that the psychotherapist and adult with FASD maintain contact over time. However, once the client and the psychotherapist have established a way to talk relevantly about issues and events, meeting less frequently but over a longer period of time has advantages. Behaviors and problems are often patterned and recurrent.

Once the psychotherapist and adult client together discern these behaviors and patterns,they can monitor and apply this information to new situations as they emerge over time.

Focusing on social mores/social acceptance

Adults with FASD often struggle to accept the people who are accepting of them.They often misread the signs concerning the intentions and reactions of others. Adults with FASD are often confused and misled by media representations of relationships, particularly the highly sexualized, “no means yes” norms suggested by these media representations.

Real relationships and real expectations between people typically do not operate the way the media depicts. Focusing on specific, unambiguous, and
real-life norms and laws, and on learning and using explicit ways of verbally checking out assumptions, is central to supporting the challenge of developing a robust and happy social life for the adult with FASD.

Clinical example

A 24 -year-old male client followed a similar pattern in each of his jobs. Early on in a job, he had trouble quickly learning new skills and routines, and he had trouble communicating his needs concerning these skills and routines. My client was in danger of appearing unmotivated or far less capable than he really was. Later, as he became more comfortable at a job, he had a strong desire to alter and add to how things were being done. At times he persisted in his creative efforts in ways that were perceived as insubordination. Helping him and his bosses understand this supposed insubordination became critical to his keeping the job.

As he became more comfortable at work, this young man met many of his social needs through his job. However, he frequently misinterpreted friendliness, especially from kindly young women, as interest in a fuller relationship. His persistence in pressing for his preferred definition of the relationship caused frequent problems. The trajectory of his life on the job tended to follow this path. Being on the alert and open to signs of these problems emerging was an important part of making the psychotherapy about change instead of about support.

It is important to note that the individualized arrangements that allow a job or social arrangement to work may be undone by a change in management or a change in practices at the work or social setting. One cannot assume that information and accommodations that initially allowed for a successful work/social experience will be carried down over time. A time of change is generally a time to be on high alert.

Psychotherapy or counseling which incorporates the features described above will be an asset for the adult with FASD. Coaching the adult with FASD over time to accurately assess situations, behavior, and experiences should be a part of the standard of care for adults with FASD.

Dr.Estenson is a licensed clinical psychologist in private practice with Ann Arbor Center for the Family in Ann Arbor, MI. Particular interests include issues related to compulsive/addictive behaviors, chronic illness, and older adults. He has had extensive experience with hospital treatment of substance abuse and psychiatric problems and with consultation to both treatment settings and schools.