FAS/FAE community loses pioneer advocate
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.
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
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
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
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 email@example.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
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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
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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
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
- 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
- Develop innovative ways to prevent alcohol use by women in
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
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
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.
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
- 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
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
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.
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The value of psychotherapy for adults with
Fetal Alcohol Spectrum Disorders
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.
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
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
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
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
Real relationships and real expectations between people typically
do not operate the way the media depicts. Focusing on specific,
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
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
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