FASD Leadership Conference on the Next
Challenge: Intervention and Treatment for Alcohol-Affected Individuals
In October of 2007, another positive step was taken to advance
the field of fetal alcohol spectrum disorders (FASD), by highlighting
progress in intervention and treatment. The FASD Fall Leadership
Conference, titled “Intervention and Treatment for Alcohol-Affected
Individuals: The Next Challenge,” was sponsored by the FAS
Center of the Marcus Institute in Atlanta. A university center for
Excellence in Developmental Disabilities, affiliated with the Kennedy
Kreiger Institute, the Marcus Institute is a charitable non-profit
organization with a mission of “turning disabilities into
That positive outlook was the foundation of the conference, and
intervention and treatment remain important themes to families and
treating professionals. Intervention and treatment methods are also
gaining increased attention in research, public policy and publications.
There is mounting community awareness of the need for (and possibilities
of) treatment for those with FASD.
Attending this well-run conference were leaders in FASD intervention:
parents, clinicians, researchers, policymakers, judges, representatives
of family and professional organizations— and experts in other
fields who could prompt creative and productive new directions.
Participants came from all over the U.S., and from locations as
far away as Canada and South Africa. Dr. Claire Coles, Director
of the Marcus Institute FAS Center and Professor of Psychiatry and
Behavioral Sciences at Emory University School of Medicine, and
her remarkable team of colleagues were the energizing force behind
this effort. The conference was designed to bring together individuals
who could discuss what has been done so far in FASD intervention,
brainstorm what is needed to move the field forward, and create
informed recommendations. Peer-reviewed publications were sent out
in advance to create common ground among participants.
Conference goals and expert opinion survey:
The morning of October 21st began with Dr. Coles laying out conference
goals and information from an opinion survey sent to attendees prior
to the conference. A significant highlight of survey results showed
that all respondents firmly believe in the possibility (and reality)
of improved outcomes for individuals with FASD. Participants gave
many reasons, such as what we now know scientifically about brain
plasticity, and what we know about the effectiveness and positive
outcome of early intervention in other contexts. Other reasons included
promising results of current systematic research on tailored FASD
intervention studies, and “protective factors” that
have been identified related to positive outcomes in naturalistic,
retrospective research. Respondents indicated there was also reason
to believe in improved outcomes based on reports by parents of children
with FASD. These parents gave examples of significant improvement
in their children arising from learning and behavior interventions.
The opinion survey also outlined the next steps (and most important
areas) for intervention and treatment for individuals with an FASD.
These were in the areas of advocacy, research, clinical applications,
education, care giving/family education and support, professional/community
outreach, and public policy. Early intervention was often cited,
as were behavioral interventions, social skills/friendship groups,
alcohol and substance abuse education, and medical treatments. Responders
also emphasized the great need for individualized programming for
affected individuals and their caregivers. Survey results gave many
other ideas about treatments, limitations in knowledge, and challenges
between or within systems of care. Survey results also noted recommendations
made in 1996 by the Institute of Medicine Report on FASD that still
|At the Leadership Conference, there was
a clear sense that sustained effort, and building on what has
been done so far, were important in responding to the needs
of individuals affected by prenatal alcohol exposure.
Maintaining momentum and mapping the future of FASD intervention:
Callie Gass, who has played a central role in the Substance Abuse
and Mental Health Services Administration (SAMSHA) FASD Center for
Excellence, gave a talk entitled, “Continuing the Conversation:
Town Hall Meetings Four Years After.” Fifteen town hall meetings
held in different states across the U.S. were convened in 2002 and
2003. Their findings were published in a report called: “Starting
the Conversation: Town Hall Meetings on Fetal Alcohol Spectrum Disorders,”
available through the SAMHSA FASD Center for Excellence. The town
hall meetings allowed various FASD constituency groups to identify
areas of need and share information on available services for preventing
and treating FASD. Participants ranged from persons with an FASD
to families, providers, community leaders, researchers and policymakers,
while testimony addressed needs and best practices. The meetings
raised awareness of FASD and increased support for states’
efforts. Ms. Gass noted that the FASD Center for Excellence has
been working to meet identified needs, and to catalogue efforts
toward prevention, diagnosis and treatment of FASD on an impressive
Web site. She pointed out what has been done to prepare useful publications,
sponsor community-based research, and conduct a widespread campaign
of public and professional education. [See fascenter.samhsa.gov
for more information].
National Task Force on FAS and FAE is about to issue a Brief
Research and Policy Report titled: “Call to Action:
Advancing Essential Services and Research on Fetal Alcohol
report can be used by advocates, and by those who want to
learn about FASD intervention and research.
Links to this report will be available later from Iceberg.
To learn how to obtain copies of this report now, call (206)
Dr. Heather Carmichael Olson of the University of Washington gave
a talk entitled, “A Call to Action: Mapping the Future of
FASD Intervention.” Dr. Olson covered the history of FASD
intervention efforts. And she sounded a call to action to maintain
progress and map the future of this important effort. Dr. Olson
noted that the July 2007 annual meeting of the FASD Study Group,
an international research-gathering panel, was focused on intervention
research. She also spoke about the efforts of the National
Task Force on Fetal Alcohol Syndrome and Fetal Alcohol Effect,
a Congressionally mandated committee that operated from 2000 to
2007 and was coordinated by the U.S. Centers for Disease Control
(CDC). This task force included researchers, clinicians, policymakers,
family advocates, and liaison representatives of important professional
organizations. Dr. Olson reviewed the 10 specific recommendations
of a new Brief Research and Policy Report, written by task force
members, titled, “A Call to Action: Advancing Essential Services
and Research on Fetal Alcohol Spectrum Disorders.” (See sidebar)
Dr. Olson suggested strongly that advocates (and others who care
about FASD) obtain and disseminate copies of the report to stimulate
progress on intervention.
Dr. Olson also discussed the “essential ingredients”
in intervention for FASD and the need for a continuum of services,
emphasizing that FASD affect individuals of all ages and families
across generations. Dr. Olson shared ideas for leveraging research
to make faster progress on FASD intervention, including mention
of current systematic CDC-funded treatment research. Ending her
talk, Dr. Olson shared her views on why FASD intervention is very
worthwhile. Current research suggests the promise of intervention…
but so does the commitment, courage and progress made by affected
individuals and their families, and caring providers. These are
human resources with great power for change.
The possibilities of early intervention for FASD:
Early intervention was a clear focus in the conference, and is
likely to be a major focal point in treatment for FASD. Early intervention
holds promise, but research and community efforts need to be mobilized.
Shahirose Premji, R.N., N.P., of the University of Calgary in Alberta,
Canada, spoke about “Early Intervention for Children and Youth
with an FASD: Is There a Sufficient Research Base?” Her published
research, in which she reviewed existing literature, emphasized
the need for building a foundation of scientific evidence upon which
to draw recommendations about efficacious interventions for children
and youth with an FASD. This was another call to action for the
Dr. Sharon Landesman Ramey, of Georgetown University Center on
Health and Education in Washington DC, gave a talk based on her
wealth of experience, extensive publication and public policy leadership
in the field of early intervention. Dr. Ramey conducted some of
the very earliest research on the impact of prenatal alcohol exposure
on human infants. At the conference, Dr. Ramey spoke about “Tailoring
Early Interventions to Maximize Child Benefits and Feasible Service
Delivery.” Among other topics, Dr. Ramey presented principles
of effective early intervention, and suggested strategies for how
early intervention for FASD could be approached. She acknowledged
the utility of family support services. But essential points made
by Dr. Ramey were that the most effective early intervention lies
in direct treatment of the child, and that more intensive early
intervention has been found to be most effective over time.
Assisting the educational system in responding to FASD:
Assisting the educational system in responding to school-aged children
with FASD was another major conference focus. Dr. Anne Smith, of
the U.S. Department of Education, and Dr. Sally Anderson, of the
National Institute on Alcohol Abuse and Alcoholism (NIAAA), spoke
about this topic. They gave an overview of themes from a recent
symposium called, “Improving Educational Outcomes for Students
with Intellectual and Behavioral Disabilities due to Prenatal Alcohol
This symposium was sponsored by the Interagency
Coordinating Committee on Fetal Alcohol Syndrome (ICCFAS), which
works to guide collaborative efforts of service systems relevant
to disorders caused by prenatal alcohol exposure. The recent symposium
showcased growing research on how to improve outcomes for school-aged
children with FASD, and the need for data to guide educational efforts.
At the conference, this presentation emphasized a commitment to
implementing evidence-based educational practice for FASD.
Brainstorming recommendations for intervention and treatment for
The afternoon of October 22nd and morning of October 23rd were
spent in targeted and productive group discussion. Groups were focused
on: (1) Education/Early Intervention, (2) Medical/Diagnostic Issues,
(3) Social Policy/Justice Issues, and (4) Behavior/Mental Health
Issues. Groups were set up to include a wide variety of perspectives
and practical experience pertinent to the specific discussion topic.
Throughout the conference, formal and informal discussion was wide-ranging.
Only a few discussion topics are mentioned here. Dr. Colleen Adnams,
from the University of Cape Town in South Africa, discussed intervention
and prevention efforts in an area of the world where the public
health problems of FASD is especially prevalent and troubling. Dr.
Barbara Morse, of the Fetal Alcohol Education Program in Boston,
Massachusetts, talked about the need for pulling together standards
of care, educating physicians and medical students about FASD, and
creating a “better public face for FAS.” The activities
of the CDC-funded Regional
Training Centers for professional education on FASD were mentioned.
Participants noted the importance of “service to science”
data gathering, and also highlighted the importance of supporting
families, and the continuing and pressing need to train professionals
in many disciplines about FASD. Groups generated creative ideas
for education and for raising community awareness through the Web.
There was also speculation about needed directions for future research,
and lively networking to create ideas for future projects.
The final hour of the conference brought together the “sense”
of the conference, the output of group discussion, and concrete
recommendations. These are to be disseminated by conference organizers
in future publications.
Coming together with hope for the future:
This conference was a wonderful intersection of families, professionals
and policymakers. Representatives of the NIAAA, CDC, SAMHSA, Center
for Substance Abuse Prevention (CSAP), and the U.S. Department of
Education were all there. Academic institutions, hospitals, state
and judicial agencies, developmental disability organizations, consultants
from other fields, and FASD family advocacy organizations, such
as NOFAS, were represented. Pioneers and leaders in the field came
together with a new and growing generation of those interested in
FASD. This Leadership Conference was creative and energizing—accomplishing
its aim to build momentum and a strong sense of purpose to help
individuals with FASD and those who care for them.
This article can present only conference highlights. Additional
detail on conference content may be available directly from the
FAS Center at the Marcus Institute at: http://www.psychiatry.emory.edu/PROGRAMS/GADrug/
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Briana, age 17 and a high school senior, won an award at her school
in March 2008 for “Every Student Succeeding.” Below
is the essay she wrote about her struggles and triumphs in overcoming
From Tragedy to Triumph
I came into this world April 13th, 1990 at Long Beach Memorial
Hospital to a crack addict and alcoholic. My birthmother, I am told
held a bottle of Jack Daniels Whiskey firmly to her chest and the
emergency room personnel were unable to pry it from her grip until
I was born. Then my first fragile minutes of life kept them otherwise
occupied. I was suffering intrauterine growth retardation, holes
in my heart, cerebral palsy, as well as withdrawal.
My prognosis was bleak. Children born with Fetal Alcohol Effects
and Crack Cocaine addiction were expected to have a poor future.
After a stint in neonatal intensive care I was whisked up by the
Department of Children and Family Services and placed in a foster
My initial placement was in the home of a kind Jehovah Witness
family that went on a vacation and left me for respite care in what
became my permanent home. While in respite with the Koeppe family,
the foster mother noticed I kept turning blue and I was very unresponsive
and weak. She took me to a cardiologist and found I had several
holes in my heart. I also went to a neurologist who discovered I
had cerebral palsy. The first foster family had assumed that because
I was a drug baby I could be over-stimulated so they kept me in
a box in a darkened room all the time. This made my cerebral palsy
worse and I became very withdrawn, and failed to thrive. I was six
weeks old when the Koeppe Family got me. They had an adult daughter
who was a nurse and she immediately began physical therapy. They
held me constantly and played with me to stimulate my brain.
Initially, I was assessed as possibly being autistic and mentally
retarded. My foster parent’s days were filled with taking
me to from one specialist to the next; a neurologist, a developmental
pediatrician, a geneticist, and a cardiologist. I suffered global
delays which meant I was not able to communicate, walk, or play
like other children my age. My lower legs suffered from hypertonia
and my upper body suffered from hypotonia, or weak muscles. My foster
parents brought up the topic of adoption to my social worker, but
she shot it down stating I was damaged goods and considered unadoptable
because of my multiple problems.
The most important thing I have learned from my adopted family
is to never give up. They did not accept that I was damaged goods
and that there was no future for me. They also did not accept that
I was unadoptable. The woman, who became my mom, didn’t go
to my social worker’s supervisor, nor did she go to her supervisor.
Instead she contacted the director of adoptions and made her listen
to her desire to adopt me, and also told her that she felt I could
be anything I wanted to be as long as I had a loving safe family
behind me, and that they were that family.
It took fifteen court appearances for my adoptive parents to fight
for the termination of my birthmother’s parental rights, and
for me to be referred to adoptions. I was three when my adoption
was finalized. My parents told the judge they would love me no matter
what my future held, but they were determined I would make it. They
did everything they could to help me reach my potential. Their determination
became my own motto.
The Journey of my short life has not been easy. I went through
years of physical, occupational, and speech therapy. Initially I
went to Buena Park Speech and Language Center, a non-public school
for special children. There I first learned sign language to communicate.
Then, I was transferred to my own school district where I received
intensive speech therapy. During this time my family also worked
with me. They patiently and repetitively went over academic milestones
so when I entered kindergarten I could already read. My health problems
continued. I still suffered failure to thrive and was chronically
ill. I tired out easily from muscle fatigued. I also had to have
three surgeries. Eventually, I did learn how to walk. First, on
my toes at two, then my parents put me in dance class to help my
muscle coordination. I watched the advanced senior dancers in awe
and told myself someday that was going to be me. I had to work ten
times harder than everyone because of the holes in my heart and
my hypertonia, but the girl who was not supposed to learn to walk
continued to dance. I have been dancing now for fourteen years.
Last year I performed at Disneyland, on a cruise ship to Mexico,
and for the Sante Fe Springs Parade with the Broadway cast of Grease
as well as took high first awards in several dance competitions.
When I was in third grade my class was able to attend an honor
roll assembly for the upper graders. I watched the smartest kids
of my school take Presidential Honor Awards and make honor roll.
I knew that school came hard for me but I was determined that when
I was graduated from fifth grade, I would be walking off the stage
with those awards too. Teachers informed me it would be very difficult
to receive those awards, but my family supported me and in fifth
grade, I took home every award, but the Daughters of the American
I have continued to struggle throughout my school years, yet I
have remained an honor student both in middle and high school. Today,
I am a senior taking Calculus, and at this time I have a B. I am
very proud of myself. Through my personal struggles, I have learned
invaluable life lessons. I have learned that anything is possible
when a person believes in themselves, establishes personal goals,
and is willing to work hard enough to attain their dreams. I look
at how my life was supposed to have been a tragedy, but instead
through faith and hard work became a personal triumph. I know I
will continue to succeed.
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Thinking of Kirt
My name is Aaron and I am 17 years old. I am adopted. My birthmother
abused drugs and alcohol and I have had to work hard in school.
My family has adopted a lot of kids who have been hurt by drugs
and alcohol. My sister adopted Kirt and he has Fetal Alcohol Syndrome.
At school I hear about kids who get drunk all the time and are partying.
A lot of these girls end up pregnant. My teacher asked us to write
a poem about the dangers of alcohol so I wrote about Kirt. He is
mentally retarded. It is so sad he could have been normal if his
mom hadn't drank during her pregnancy. These girls could have a
baby like Kirt. My sister liked the poem I wrote and told me to
share it with you. Maybe you should talk to teenagers more they
aren't hearing enough about FAS.
Now… 7 years old
What she was told.
She took a little Heroin
She took a little speed,
A dime a day…
Didn’t take care of her need.
An innocent babe, Kirt
Grew in her womb
Every sip of alcohol was
Leading to his doom.
Born too tiny
With a small head
The doctors figured
He was better off dead.
“Why?” They cried,
“We told you pregnancy
And alcohol doesn’t mix!”
You’ve brain damaged your baby!
This is not something we can fix!”
Fetal Alcohol Syndrome is Kirt’s illness’s
Drink any alcohol while pregnant,
And your child will be lame.
Some young girls they party,
…have sex, do drugs and are wild…
Never knowing they are growing a child.
By the time you find out your baby could be
Before you think of partying
Please think of Kirt!
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FASD Conference, in Seattle
The Center on Human Development and Disability (CHDD), at the University
of Washington, is hosting an FASD conference showcasing FASD efforts
at the CHDD and sister institutions. The event is sponsored by CHDD
Director, Michael Guralnick, Ph.D.
A distinguished researcher in the field of FASD, Claire Coles,
Ph.D., will be a featured speaker. Dr. Coles is Director of the
Fetal Alcohol Center at the Marcus Institute, a university-based
child development center in Atlanta, Georgia, She is also Professor
of Psychiatry and Behavioral Sciences at Emory University School
of Medicine in Atlanta.
The key event will be a 3-hour conference.
Place: Experimental Education Unit at the University of Washington
(CD 150 auditorium)
Date: April 3, 2008
Topic: FASD: How Do We Meet the Challenge?
Susan Astley: Strides in FASD Diagnosis and Prevention in Washington
Therese Grant: Preventing FASD: Successful Strategies and Lessons
Learned from the Parent-Child Assistance Program
Heather Carmichael Olson: A Call to Action: Current Research on
FASD Intervention (and Contributions from Washington State)
Claire Coles: FASD: New Directions for Research and Practice
Refreshments will be served.
All are welcome to attend.
Submit an Article to Iceberg
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