The Current State of FASD Intervention:
An Overview to Spark Debate and New Ideas
An effective response to the public health problem of children
affected by fetal alcohol spectrum disorders (FASD) centers around
accessible diagnosis and systematic referral to scientifically-evaluated
community-based interventions. FASD intervention that measurably
improves childhood outcomes may prevent later debilitating and costly
secondary conditions. But what is the current state of the field
of FASD intervention? What is being tried? What directions may be
promising? What are suggestions for creating FASD interventions,
and for doing intervention research right now?
Current research confirms that prenatal alcohol exposure can lead
to significant developmental disabilities, now recognized under
the umbrella term of FASD (NOFAS, 2004). The full fetal alcohol
syndrome (FAS) is found in only a fairly small proportion of children
affected by prenatal alcohol exposure. Many children have alcohol-induced
impairments that can be just as serious, or more so, than those
seen in FAS (Mattson et al., 1998). The term alcohol-related neurodevelopmental
disorder (ARND) has been applied to this condition (NIAAA, 2000).
Prevalence rates of the full range of FASD, including both FAS and
ARND, occur at a rate of 2 to 6 per 1,000 (CDC, 2005), and this
begins to approach the latest estimated prevalence of autism spectrum
Clearly, FASD is an important problem that parents and professionals
will encounter. Those who care for children and adults with FASD
want (and need) ideas and research about how to help and intervene.
This is an interesting time in the evolution of FASD intervention.
Many ideas are circulating, systematic intervention research is
just beginning, and field-initiated projects are underway and being
evaluated. There is discussion of intervention at the national and
provincial level in the U.S. and Canada, and in many other countries
across the globe. Animal research and anecdotal evidence suggests
that intervention can make a difference. There is room for optimism.
How to Read This Article (Choose Your Own Adventure!)
To help guide practice and research in FASD intervention, and
give all interested readers “food for thought,” this
article speculates on many aspects of the continuum of FASD intervention
services. FASD prevention is not covered. This article is designed
so the reader can navigate through the intervention continuum via
links in the following two summary diagrams. The reader can click
on part of a diagram, and jump to a discussion of that portion of
the FASD intervention continuum. The diagrams, presented after this
introductory section, are:
ONE: “Initial FASD intervention services”
TWO: “Continuing FASD intervention services”
In this article, only brief descriptions of ideas and work in various
areas are presented; these brief descriptions are followed by a
variety of ideas for actions to promote FASD intervention. The intent
of this article is to spark discussion, debate and new energy devoted
to FASD intervention. The information discussed here comes simply
from the perspective of one researcher (who is also a clinician)
who has thought a lot about FASD intervention. Also cited are articles
to allow the reader to learn more about FASD intervention and Web
sites where ideas for intervention can be explored further. There
is no attempt to be comprehensive and many wonderful efforts and
projects have certainly been missed, but hopefully the following
information will help readers on their search for promising ideas
and projects in FASD intervention. Perhaps parents, clinicians and
researchers involved in any efforts not mentioned will write in
to share what they are doing! Then perhaps others can begin to collaborate
with them, or be encouraged to replicate their efforts.
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SANDY MCAULIFF – A Presence Larger than
In September 2005, Sandy McAuliff died while recovering from surgery.
It’s still hard to believe she is gone. For patients with
fetal alcohol spectrum disorders and their families, the loss is
irreplaceable. For those of us at the University of Washington Fetal
Alcohol and Drug Unit in Seattle, who counted on her skill and expertise,
the loss is irreplaceable. She never undertook a new job at the
unit in which she did not exceed expectations. She never did things
the way they’d been done before – she always developed
a better way. She never believed a person was hopeless – she
always saw hope.
Sandy began work with us as the head outreach worker for our cocaine
study in 1989. She and six other outreach workers were responsible
for tracking the mothers who had used cocaine during pregnancy so
that we could find and examine their children at the proper time.
They followed an incredible 90 percent of the mothers for 18 months.
After we began an intervention program called “Birth to 3”
(later known as PCAP, the Parent Child Assistance Program, with
new funding from the Center for Substance Abuse Prevention), she
wasn’t satisfied to just talk with the new mothers in the
program about their life goals. Not Sandy. She developed a card
game in which the mothers sorted cards depicting various options
into separate piles representing the choices that would make a difference
in their lives. This ingenious system not only yielded quantifiable
data, but the mothers felt it helped them express themselves and
see change as they progressed in the program. The unit has distributed
hundreds of these sets of cards to programs also hoping to document
the life goals of high-risk mothers. Sandy was an ”innovator”
and a “doer” – not a “writer”. Her
one paper with us, however, has been very popular: “The Difference
Game: Facilitating change in high-risk clients.” (Families
in Society: The Journal of Contemporary Human Services, 78(4), 429-432.
Grant, Ernst, McAuliff, & Streissguth (1997))
Sandy never believed she knew enough. As long as I’d known
her she had been studying and developing new ways to help people:
After studying the Home Builders Program, she developed a special
component for drug-affected families; developed holistic intensive
interventions for CPS; integrated Family Preservation Services into
Alcohol and Substance Abuse Treatment; developed an “additions”
project to add service delivery for families with drug and alcohol
problems; worked with teenage mothers; developed multi-modal services
for suicidal and drug abusing patients; co-developed a manual for
case management and environmental intervention to be compatible
with Dr. Linehan’s dialectical behavior therapy program; studied
motivational interviewing; developed an answering service protocol
for crisis intervention; and was herself a state foster parent who
parented 14 children.
While working with us and afterwards, Sandy finished a B.S. in
Social Work and went on to obtain a Masters Degree in Social Work
at the University of Washington where she was awarded the Edna McDonnell
Clark award for family preservation and child welfare studies. A
life-long learner, Sandy was always attending programs or working
with people from whom she could learn more techniques for family
preservation or helping high-risk children. Actually, though, her
success came from her special ability to connect with patients,
develop trust and inspire change. Sandy was the most intuitive therapist
I have ever worked with. She would always come to the rescue of
patients with FASD in dire straits, regardless of their age or extenuating
circumstances. No matter how difficult their behaviors were, they
inevitably seemed better while Sandy was working with them.
Reminiscing about Sandy, Therese Grant, now the Director of FADU,
recalled Sandy’s “Empty Pockets” game, which always
worked with our youngsters with FASD who had a propensity for shoplifting.
“We’re going into this store now, “ she’d
say, “and I bet you can’t come out with Empty Pockets.”
“Oh yes I can!” “Well, I don’t think so,
and I‘ll be surprised if you can!” She was always surprised;
the pockets were always empty, an occasion for much celebratory
back slapping and laughing.
That’s the way it always was with Sandy. She made the good
things happen, in new ways, in exciting ways, and with more enthusiasm
and pizzazz than anyone else. Thanks Sandy, we are all better for
having had you in our lives; you live on in all of our hearts.
With great fondness and sadness,
Ann Streissguth and the team at the University of Washington Fetal
Alcohol & Drug Unit in Seattle, Washington.
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Hard to Place: A Crime of Alcohol
by Katherine Norgard
In 1968, the author Katherine Norgard and her husband adopted
a 15-month-old baby boy; the only stipulation they made regarding
the adoption was that the child not be handicapped. Twenty-eight
years later, they finally found out that their son John had Fetal
Alcohol Syndrome. At that time, John was in the legal system and
had been sentenced to death for the murders of an elderly couple
The author describes John’s childhood, noting the fact that,
“he was behind in his developmental milestones and small for
his age.” At the time, she was assured by the social worker
that the delays were because he had been in the foster care system.
Norgard notes that John lied a lot and didn’t seem to learn
from consequences, and that he stole things. All the attention he
received didn’t seem to help him. The author’s husband
asked for a divorce if they did not give John back to the adoption
agency. The author chose to keep her son and get a divorce.
The book focuses on John’s entry into the criminal justice
system, and his ultimate incarceration on death row. In the foreword
of the book, Helen Prejean says, “When the incomprehensible
tragedy happened, the deepest, most painful journey of her (the
author’s) life began. It became a struggle for life itself
that catapulted Kathy and her family into a decade of sleepless
nights, grief, depression and confusion before the truth finally
emerged. Kathy’s son’s brain had been irreparably damaged.
His hard wiring was permanently askew. His wound has a name: Fetal
In my opinion, the author writes about her son and the family’s
agony with clarity and passion. I appreciate that she described
blaming various people and systems along the way, ultimately coming
to understand that blaming didn’t help, while understanding
and teaching others did. Though not a recipe book or a how-to book,
the reader can take away many ideas about dealing with the criminal
justice system. She also describes her family’s emotional
struggles in a manner that helps the reader get a sense of feeling
them along with her and her family.
I would recommend this book to anyone who works in the criminal
justice system, as well as to parents and caretakers of individuals
who have an FASD.
Hard to Place: A Crime of Alcohol was published by Recovery Resources
Press, Tucson, Arizona.