A Great Voice of FASD Retires
After more than 30 years of tireless service to the field of Fetal
Alcohol Spectrum Disorders (FASD), Dr. Ann Streissguth has officially
announced her retirement as professor in the Department of Psychiatry
and Behavioral Sciences, and director of the Fetal Alcohol and Drug
Unit (FADU) within the University of Washington in Seattle. Ann
founded the FADU in the early 1970’s, was involved in the
initial study that identified the first cases of Fetal Alcohol Syndrome
(FAS) in 1973, and began the first longitudinal study of the long
term developmental effects of prenatal alcohol exposure. She was
also one of the founding members of the Fetal Alcohol Syndrome Information
Services (FASIS) board, which produces Iceberg.
Ann & Daniel Streissguth
Ann_received her Ph.D. from the University
of Washington in 1964 and took a job as a psychologist in the departments
of Psychiatry and Pediatrics. In 1973, Dr. David Smith, a dysmorphologist,
asked her to see a series of children who were born to alcoholic
women. These were the first children to be diagnosed with FAS. Thus
was born her long interest in the effects of prenatal alcohol exposure.
Since that time Ann has published over 124 articles, 62 book chapters,
and 3 books on the subject. In a world of increasing difficulties
with funding, Ann’s work has been continuously funded by grants
from the federal and local governments and foundations since 1974.
She has given talks on the effects of FAS to professionals and family
members around the world. She is recognized as one of the leaders
in this field and has trained many professionals who have gone on
to do FASD research and clinical work.
The Department of Psychiatry and Behavioral Sciences honored Ann’s
many years of service to the university and the field of FASD by
throwing a large party in November 2005. Many of her former colleagues
and students were able to attend and see Ann again, some after many
years of separation. Included among the speakers were Dr. Irwin
Sarason, her dissertation chair, Dr. Richard Veith, the current
chair of the Department of Psychiatry and Behavioral Sciences, Charles
Huffine, an Iceberg board member and child psychiatrist, Jocie DeVries,
from the FAS Family Resource Institute, Fred Bookstein, a statistician
who has worked with Ann on her studies of FASD for nearly 20 years,
and Therese Grant and other members of the Parent-Child Assistance
Program. It was a wonderful evening to honor Ann’s service
over the many years and to wish her good luck with her future endeavors.
Despite Ann’s retirement, her brainchild – the Fetal
Alcohol and Drug Unit – will continue to study the effects
of prenatal alcohol exposure. Because no one person is able to fill
Ann’s shoes, three individuals within the unit will take on
directorship roles. Therese Grant has taken the position as director
of FADU with the assistance of two co-directors; Fred Bookstein
will serve as the scientific director and Paul Connor will serve
as the clinical director.
Ann in Streissguth
And – lest you think that Ann has left the university for
some well deserved rest and to pursue her other interests, including
gardening and travel – I can happily inform you that immediately
after her retirement, she was re-hired as professor emeritus within
the university and continues to work part time at FADU writing research
papers and running one of the studies she started over 30 years
Thank you, Ann, for being such a strong voice and advocate for
families affected by prenatal alcohol damage!
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Karli’s artwork (completed in 2005)
Although Karli Schrider lives with FASD and faces
difficult daily challenges, she continues to motivate and inspire
those who meet her. In 1994, Karli began volunteering for the National
Organization on Fetal Alcohol Syndrome (NOFAS). NOFAS is a non-profit
organization based in Washington, D.C., that is committed to raising
public awareness of FASD.
Karli created artwork used by the organization on its prevention
materials and in publications, and has helped disseminate FASD-prevention
material. By allowing NOFAS to share her life story and experiences,
Karli provides encouragement to others with FASD, and the families
and educators who support them.
Karli has appeared on numerous television programs such as “The
Leeza Show” and NBC’s “Real Life” to help
people understand the effects of FASD. Karli has also co-presented
at several national FASD conferences, and has been featured in many
FASD educational videos. In 1999, former President George Bush personally
presented Karli with the Daily Point of Lights Award for her volunteer
efforts. Karli’s efforts have been invaluable in the continuing
fight to increase the understanding—and ultimate prevention—of
Fetal Alcohol Syndrome. Karli is now 32 years old.
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Save This Date
THE NATIONAL ORGANIZATION
ON FETAL ALCOHOL SYNDROME WASHINGTON STATE
INVITES YOU TO JOIN US
The 2006 Northwest Regional FASD Conference
(Washington, Alaska, Oregon, British Columbia)
October 5 & 6, 2006.
Lynnwood Convention Center
Conference Sponsor National Organization on Fetal Alcohol Syndrome
National Organization on Fetal Alcohol
Syndrome Alaska (NOFAS AK)
National Organization on Fetal Alcohol Syndrome Oregon (NOFAS OR)
National Organization on Fetal Alcohol Syndrome (NOFAS)
Recognizing that diagnosis is only the first step
on the continuum of care and intervention that individuals with
Fetal Alcohol Spectrum Disorders require to be successful, we are
offering a conference with a focus on bridging the gap between diagnosis
This regional conference will offer a mix of educational
opportunities for individuals with alcohol related disabilities,
parents, caregivers, nurses, educators, physicians, mental health
workers, social workers, juvenile justice workers and other professionals
working with and supporting individuals affected by prenatal alcohol
Susan Astley, Ph.D Allison Brooks, Ph.D Sterling Clarren, M.D.Sandra
Maida Chen, M.D Julie Gelo. Sue Green , MPA, MCAC
Carolyn Hartness Diane Malbin, MSW Heather Carmichael Olson, Ph.D
Anne Streissguth Ph.D
Deb Evenson, MA
For information contact: Julie Gelo, Executive Director,
NOFAS WA (260) 940-2832, FASDSupport@aol.com
Request for proposals documantation
and submission form.
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The Families Moving Forward Project: Promising
Research Helps Families Raising Children with FASD
Systematic research on intervention has long been needed to assist
families raising children with Fetal Alcohol Spectrum Disorders
(FASD). Families want to know what works. Professionals assisting
families have also needed information about scientifically tested
interventions that can help them be as effective as possible. Fortunately,
over the past few years, the pace of such research has accelerated.
Now there are a number of promising intervention models being studied.
Research on a variety of models is important because FASD is a multifaceted
problem, and we know that a continuum of intervention services is
Behavioral Consultation Services: An Essential Area of FASD Intervention
Behavioral consultation services for caregivers are a very important
and high-priority focus of FASD intervention research. Specialized
behavioral consultation can provide flexible, ongoing and comprehensive
support that is carefully targeted to the individual needs (and
strengths!) of caregivers raising children with FASD who have especially
challenging learning and behavior problems. Studying how best to
offer behavioral consultation for FASD is essential. Behavioral
consultation can be provided at a clinic, in the schools or, if
at all possible, in a home-visiting model. Behavioral consultation
provided as a home-visiting service can reduce many treatment barriers
and generate practical intervention ideas based on a real understanding
of the child at home and at school.
Leading the way in study of behavioral consultation services is
the Families Moving Forward (FMF) Project, a groundbreaking project
funded by the Centers for Disease Control and Prevention (CDC) that
began in 2001. The FMF model provides behavior consultation as a
collaborative process between parents and a specially trained support
specialist in every-other-week visits to the home. These home-based
services make intervention accessible for families. The model includes
targeted school consultation, when the support specialist can accompany
the parent to the school to meet with the teacher (and sometimes
other important school staff) at a time that is important for the
child’s school progress. If additional school consultation
is needed, this can be done—but behavioral consultation with
the family is the most important aspect in FMF program. The parent
is usually the child’s most important advocate across time.
The “Families Moving Forward” Intervention Model
What actually happens in the Families Moving Forward Program?
More information will be provided in the detailed scientific and
clinical write-ups that the research team is at work upon right
now. But a brief sketch of the intervention model in described below.
Children clearly identified with FASD first receive neurodevelopmental
testing, and their parents complete questionnaires and interviews.
Home visits are then made over a 9 to 11 month period. In these
visits, there is discussion covering a variety of topics to provide
the parents support, specialized education, and practice on skills
using a “family curriculum.” This curriculum includes
fact sheets, work sheets, videotape and other specially designed
materials to help parents feel more effective and hopeful, and to
help them reshape their child’s behavior to be more adaptive
(and less challenging) in everyday life.
At its heart, the FMF intervention model is aimed at providing
ongoing support to parents and helping them better understand their
children. The intervention team also aims to help parents hone skills
they already have while adding specialized parenting techniques
to their care-giving repertoire. These specialized techniques are
based on what we theorize (based on research and clinical experience)
are best practices for raising children with FASD. The FMF model
was built on the clinical wisdom of parents and clinicians who,
for years, have cared for children with FASD.
The intervention does not replace other community resources and
providers that families find helpful, but adds value to these resources.
With the help of their support specialist, families “move
forward” on an improving life path. The FMF intervention is
realistic—services are not expected to solve all problems;
but interventionists join with families, hopefully helping to boost
their progress in a positive direction and give them reason to be
The FMF program is both “manualized” (has certain core
components and a specific session flow) and “individualized”
(has special optional components that different families can decide
to do). The session flow starts with core components of the curriculum.
About halfway through the home visits, a “pizza planning”
session is held. This particular home visit is called a pizza planning
session because the whole FMF program is described to caregivers
as a pizza, with core components seen as the necessary pizza ingredients
and optional components seen as “special” ingredients
that a family can choose to include before their sessions are done.
An example of a core component that all caregivers discuss and learn
is “reframing,” in which caregivers come to see their
child’s behavior in light of their neurodevelopmental disabilities.
An example of an optional component that some families might choose
is a session on calming strategies that can be used for children
Putting the Information to Work
The FMF team finished intervention activities in 2004, and is
now working hard on data analysis. Promising findings are beginning
to emerge, and reports on the efficacy of the Families Moving Forward
intervention model will soon be available. This project is another
avenue by which the Washington State Fetal Alcohol Syndrome Diagnostic
and Prevention Network (FAS DPN), based at the University of Washington
in Seattle, aims to serve those with FASD in Washington state and
Since the analysis of FMF data is still underway, findings reported
here are preliminary, but several results are clear:
- Participating families were highly satisfied with services
received in the FMF intervention research project, and felt they
learned useful skills.
- The project demonstrated excellent family involvement, with
92 percent of the group of 26 families successfully participating
in the full intervention.
- Analysis so far shows that FMF is a feasible intervention protocol.
Support specialists who provided the intervention described the
Here’s how information gained from the Families Moving Forward
Project can be helpful to others interested in FASD intervention:
• An intervention model designed for families raising children
with FASD is available for further research:
The FMF model of behavioral consultation services, specifically
targeted to families raising children with FASD and challenging
behavior problems, is now available for further testing. It is likely
that this model and its treatment processes can be modified for
use in clinic-based mental health settings and would translate easily
to use in early intervention. Excitingly, more research on this
intervention model is already underway! A new grant will transition
services from their base in the University of Washington academic
setting to a home-visiting community agency with multiple offices
throughout Washington state. If research findings show the efficacy
in the community setting that we expect, we hope that this agency
will eventually provide services for families in need statewide
(funded by sources such as Adoption Support or private insurance).
The plan is also to train home-visiting agencies in other states
to provide services according to the FMF intervention model.
• Specialized training on treatment processes helpful for
FASD can be made available.
The FMF project has advanced our understanding of the specific
treatment processes that may lead to improved outcome for families
and children with FASD. These processes capture important parts
of the collective clinical wisdom in FASD, combined with scientifically
tested child treatment and parenting techniques. “Reframing,”
discussed earlier, is one critical process, as is creating “accommodations,”
– practical ways to modify a child’s environment and
daily routine. “Brainstorming,” a third essential process,
is a user-friendly set of positive behavior support techniques.
And there’s more to the model! Work on the Families Moving
Forward Program has provided the foundation for developing specialized
training for professionals who want to be more effective in the
field of FASD. This training can be useful to treatment providers
such as mental health professionals and social workers, juvenile
justice workers, educators, early interventionists and others.
Ideas for more interventions techniques
sparked by FMF research:
Work of the Families Moving Forward (FMF) team has clearly
defined a set of treatment processes and behavioral consultation
techniques, and put them together in a practical model that
can be cost-effective. But the team’s work has also
provided insights into other needed interventions for families
raising young and school-aged children with FASD, and ideas
for creating these services. FASD is indeed a multifaceted
problem. Important among ideas sparked by what we’ve
learned in the FMF research are:
- The urgent need for child and teen social skills groups
that are specialized for children with FASD.
- The usefulness of sensory-based intervention techniques
in treatment for FASD (these were integrated within the
FMF behavioral consultation model and families found them
- The potential power of teaching children with FASD calming
and self-regulation techniques.
- The crucial need for “peer-driven intervention”—in
other words, community-based FASD family support and advocacy
groups that can provide specific, useful information about
community resources, as well as the embrace of parent support,
whether in the form of summer camps, monthly groups, or
an active listserv.
Of course, there are other interventions needed in the service
continuum for families raising individuals with FASD, including
effective respite care (which is so difficult to find), services
for young adults, appropriate medication management, early
intervention for learning problems, support within the juvenile
justice system and more. Luckily, researchers and helping
professionals are actively creating and evaluating such intervention
For more information:
Others interested in research and discussion about the Families
Moving Forward model, or the ideas it has sparked, are invited to
contact its director, Dr. Heather Carmichael Olson of the University
of Washington, at a special email address:
firstname.lastname@example.org. Please also see the related article in
2004 issue of Iceberg.