ABOUT FASD

Fetal Alcohol Spectrum Disorder 

Information on diagnoses, intervention, support, and prevention. 

 

Fetal Alcohol Spectrum Disorder (FASD) is the number one cause of intellectual disabilities and birth defects in the U.S; up to 1/20 school-aged children has an FASD.  The prevalence of FASD is much higher among adopted and foster children. In Maine, 50% of child removals are due to parental substance use.

FASD is an umbrella term describing the broad range of birth defects and disabilities, caused solely by alcohol use during pregnancy. These effects may include physical, neurological, behavioral, and developmental disabilities with lifelong implications.

 

Some characteristics of FASD may include:

• Hearing or vision problems -  strabismus, auditory processing disorder, ear infections

• Low birth weight or short stature (height)

• Speech and language delays

• Dental issues - malocclusion, delay of permanent teeth

• Difficulty understanding abstract concepts - metaphor, sarcasm, managing time or money

• Facial abnormalities - approximately 10% of individuals with FASD have facial abnormalities such as smaller eye openings, flattened groove above upper lip, thin upper lip

• Skeletal abnormalities - Permanent curving of the fifth finger (clinodactyly), permanent flexion contracture of a finger or toe (camptodactyly)

• Hyperactive behavior - for which ADHD medications may not be effective

• Impulsivity, poor judgment, difficulty learning from mistakes or generalizing knowledge

• Poor social skills, developmentally younger than their peers

• Poor coordination

• Organization, planning, and memory issues, difficulty with multi-tasking

• Difficulty in school despite average IQ, especially with abstract concepts like math 

• Heart, kidney abnormalities, autoimmune,  seizure disorder, sleep disorder

• Sensory processing disorder - sensitivity to light, sound, touch, smells, taste and food texture, over and under-sensitivity to pain

• Poor self-management - may have tantrums "out of nowhere", tantrums may persist past early childhood, easily overwhelmed or overstimulated by environment

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We also know, after decades of FASD research, that when we understand the brain injury and appreciate the neurodiversity of FASD we can more effectively support individuals with FASD. This support includes protective factors such as early diagnosis, early intervention, FASD-informed providers and teachers, caregiver support and training, and a stable and nurturing home environment. These protective factors* help individuals with FASD to build on their strengths and interests, to learn new skills to help them accommodate their weaknesses, and reach their developmental and educational potential.

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 The Canada FASD Research Network published an issue paper in 2018, expressing what many individuals with FASD and their families want their providers and communities to understand - individuals with FASD are so much more than their deficits, and strengths-based support is effective and crucial for success:

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"The vast majority of FASD research is focused on the challenges and impairments associated with the disability, as well as the burden of FASD on families and the broader community. This type of research can help to validate the experiences of individuals with FASD and their families, and to inform where services and supports might be needed the most. However, the simultaneous lack of strengths-based studies can perpetuate a sense of shame, suffering, and victimization, and contribute to the stigma already associated with FASD...

 

Many researchers and service providers agree that both the challenges and capabilities of those with FASD should be examined in order to best understand and meet their needs. In the nonacademic literature, individuals with FASD are often reported to be friendly, likeable, and affectionate; helpful and generous; outgoing, verbal, and good storytellers; insightful and bright in some areas; artistic and musical; mechanical and athletic; determined, hard-working, willing, and persistent; forgiving, non-judgmental, and caring; and good with children and animals. Individuals with FASD are also said to be strong hands-on learners, and may excel in nontraditional learning environments...changing the deficits-based FASD narrative will help to reduce stigma and shame, and instill a stronger sense of hope, optimism, confidence, self-advocacy, and positive identity for individuals with FASD and their families."

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*Petrenko, Christie L. M., et al. Prevention of Secondary Conditions in Fetal Alcohol Spectrum Disorders:Identification of Systems-Level Barriers.Matern Child Health J. 2014 August;18(6):1496–1505

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Medical diagnoses under the FASD umbrella: 
FAS - Fetal Alcohol Syndrome
pFAS - Partial Fetal Alcohol Syndrome
SE/AE - Static Encephalopathy/Alcohol Exposed*
ND/AE - Neurobehavioral Disorder/Alcohol Exposed 

DSM 5 Diagnosis  

ND-PAE - Neurodevelopmental Disorder with  Prenatal Alcohol Exposure

DSM 5   315.8 "Other specified neurodevelopmental disorders" DSM info here.

For more on diagnostic protocol/tools see below, "FASD Diagnosis"

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FASD is the number one cause of intellectual disability and birth defects in the U.S. It is currently estimated that FASD affects up to 5% of school-aged children - more common than autism, cerebral palsy, and Trisomy 21 combined. ​FASD is as common as asthma. The prevalence of FASD is much higher among adopted and foster children.

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FASD is preventable - with no prenatal alcohol exposure there is no FASD. Given that approximately half of all pregnancies in the United States are not planned, the U.S. Surgeon General recommends that women who are pregnant, might be pregnant, or consider becoming pregnant should abstain from alcohol. Despite these guidelines,  1 in 7 pregnant adults report drinking alcohol in the past 30 days and over one third who report consuming alcohol engage in binge drinking, a pattern of consumption most harmful to the developing fetus. 

 

One in seven pregnant adults in the U.S. report drinking alcohol in the last thirty days, 5.2%  report binge drinking. In a 2017 study, of those pregnant women who used opioids non-medically, 51.2% binge drank alcohol. 

According to the most recent Maine statistics from the CDC: 

• 62.6% of women aged 18-44 drink alcohol

• 35.3% of women aged 18-44 who drink, binge drink (4 or more drinks on one occasion)

• Overall, one in ten pregnant women in Maine reported drinking in the last trimester. Six of Maine's sixteen counties have a rate of 10% or greater, Cumberland County, 1/6.*    

• ​Every year, from 2012-2021,  800-1000 Maine newborns were reported substance exposed.

• Maine has on average 12,000 live births a year

• Every year since 2013, about 50% of child removals have been due to parental substance use.                                                                                          *2014- 2020 CDC PRAMS Data

                                         

Alcohol is a teratogen. All teratogens, such as lead or thalidomide, cause birth defects. Alcohol can cause damage to any system of the body. It is particularly destructive to the brain of the fetus, causing damage to the structures, function, neurochemistry, and the brain's ability to grow and repair. Studies show, there is no safe level of prenatal alcohol exposure. 

 

The placenta is not a barrier to alcohol. Alcohol is eliminated from the amniotic fluid at

3 - 4% the rate of the mother. This creates a prolonged alcohol exposure for the developing fetus. Changes in the fetus in the second trimester further prolong this exposure.

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Only 10% of individuals with FASD have facial abnormalities. Facial abnormalities (and the co-occurring brain injury) such as smaller eye openings and a thin upper lip, occur when the fetus is exposed to alcohol in the third week of development, when many women do not yet know they are pregnant.

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The nutritional supplement choline shows promise in the treatment of children with FASD.  Children in this study, ages 2-5, who received choline had higher non-verbal intelligence, higher visual-spatial skill, higher working memory ability, better verbal memory, and fewer behavioral symptoms of attention deficit hyperactivity disorder than the placebo group. 

Dr. Jeff Wozniak MD NOFAS Webinar - Choline Study

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PROOF Alliance

FASD Fact Sheets

How do I know if I have an FASD?

PROOF Alliance Video on Current FASD Awareness

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FAFASD Families Affected by FASD 10" Video On Basics of  FASD

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FASD Diagnosis

AAP FASD Toolkit 

Fetal Alcohol Spectrum Disorder is an umbrella term describing a broad range of adverse developmental effects that can occur in an individual with prenatal exposure to alcohol. A child or adolescent with an FASD may have a combination of physical, neurodevelopmental, neurocognitive, and behavioral problems with each manifesting a range of severity. It is not known how many people in the United States have an FASD. Several initial studies, using active case findings of school-aged children, indicate that 1% to 5% of children in the United States may have an FASD. 

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AAP FASD Live Webinar Training for AAP Members and Staff
"The American Academy of Pediatrics (AAP) established the Fetal Alcohol Spectrum Disorders (FASD) Regional Education and Awareness Liaisons (REAL) Champions Network in 2016. The goals of the FASD champions network are to meet the identified needs to improve pediatricians' capacity for early identification of at risk children and to address the role of stigma and bias in addressing prenatal alcohol exposure with families and caregivers. Champions are prepared to lead trainings and facilitate webinars and Grand Rounds presentations using the training modules developed under the auspices of the Improving FASDs Prevention and Practice through National Partnerships collaborative."

For more information on the FASD Champions Network or to schedule a training session at your site, contact Josh Benke, Program Manager, FASDs, at jbenke@aap.org or 630-626-6081.

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ND-PAE  Neurobehavioral Disorder - Associated with Prenatal Alcohol Exposure

DSM 5 Criteria

Joseph F. Hagan Jr, MD, et al. Neurobehavioral Disorder Associated With Prenatal Alcohol Exposure. PEDIATRICS Volume 138, number 4, October 2016:e20151553

Olson, Heather Carmichael. Advancing Recognition of Fetal Alcohol Spectrum Disorders: the Proposed DSM-5 Diagnosis of Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE). Curr Dev Disord Rep (2015) 2:187–198 DOI 10.1007/s40474-015-0056-4

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University of Minnesota FASD Program

"The University of Minnesota FASD program was created in 1978 and today brings together pediatricians, neuropsychologists and occupational therapists to help make recommendations to teachers, social workers and others to provide you and your child with comprehensive, coordinated care. FASD has no cure, but children with FASD can function well when given the right support system."

 

Assessment of Fetal Alcohol Spectrum Disorders  A Training Workbook

Pan American Health Association    World Health Organization

"Target audiences include physicians, psychologists, allied health professionals, social workers, and other providers that may encounter individuals affected by FASD. It is ideally used as a supplement for in-person training by experts in the fields of dysmorphology, epidemiology, and neuropsychology."

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Olson, Heather Carmichael, et al. Responding to the Challenge of Early Intervention for Fetal Alcohol Spectrum Disorders. Infants & Young Children.2007;20(2):172–189 

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Olson, Heather Carmichael and Montague, Rachel A. Prenatal Alcohol Use and FASD:Diagnosis, Assessment and New Directions in Research and Multimodal Treatment. An Innovative Look at Early Intervention for Children Affected by Prenatal Alcohol Exposure. 2011 Chapter 4:64-107

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Wozniak, Jeffrey, et al. Diagnosis, Epidemiology, Assessment, Pathophysiology, and Management of Fetal Alcohol Spectrum Disorders. Lancet Neurol. 2019 Aug;18(8):760-770

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FASD Intervention

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Families Moving Forward

Families Moving Forward (FMF) "...is based on the idea that children with FASD have brain-based difficulties - neurological impairments - that are the underlying cause of many learning and behavioral problems. Caregivers learn Positive Behavior Support, Motivational Interviewing, and other evidence-based techniques. 'Reframing' and 'accommodations' help them change their own attitudes and how they manage the child, which leads to improvements in the child's behavior. Remote Training is available for mental health professionals and agencies."

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Petrenko, Christie L.M., PhD, Positive Behavioral Interventions and Family Support for Fetal Alcohol Spectrum Disorders. Curr Dev Disord Rep. 2015 Sep;2(3):199–209

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Petrenko, Christie, L.M. PhD, et al. Prevention of Secondary Conditions in Fetal Alcohol Spectrum Disorders: Identification of Systems-Level Barriers. Matern Child Health J. 2014 Aug;18(6):1496–1505

 

How thinking about behavior differently can lead to happier FASD Families

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Graphic from:

Petrenko, Christine L.M. PhD, et al. The Association Between Parental Attributions of Misbehavior and Parenting Practices in Caregivers Raising Children with Prenatal alcohol exposure: A Mixed-methods Study.Res Dev Disabil.​ 2016 Dec;59:255-267

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FAFASD  Always Remember the Brain: 30 Strategies for Parents of Children with a Fetal Alcohol Spectrum Disorder    

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FASD United (Formerly NOFAS) - Resources - Evidence-based Programs/Intervention for FASD

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FASD Support

National FASD Collaborative Project     Support Group Calendar

​The National FASD Collaborative Project was created in late 2020 from a discussion within the NOFAS Affiliate Network, when a need was identified to increase effective supports and evidence-based training at a national level related to FASD. FASD organizations from around the U.S. joined forces under the notion that if we each "give a little," we can create more dynamic FASD systems of care nationally.
The first initiative of the Collaborative Project was the creation of a national support group calendar. The National FASD Collaborative Project is now offering 17 online FASD support groups to caregivers, birthmothers, and self-advocates nationally! These support groups are run by a range of leading organizations and experts in the field of FASD.
The support group calendar is an ongoing program through the National FASD Collaborative Project and over time, we hope to expand our support group offerings with the addition of new support groups by existing or new organizations.

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FASD United  (Formerly NOFAS National Organization on Fetal Alcohol Syndrome

FASD United  is the leading voice and resource of the Fetal Alcohol Spectrum Disorders (FASD) community. Founded in 1990, it is the only international, non-profit organization committed solely to the prevention of prenatal exposure to alcohol, drugs, and other substances known to harm fetal development, and to supporting individuals, families, and communities living with Fetal Alcohol Spectrum Disorders (FASDs) and other preventable intellectual/developmental disabilities.

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The Circle of Hope

"Welcome to the Circle of Hope (COH)! The COH was founded in 2004 by NOFAS Vice President Kathy Mitchell. It is a network of women who have consumed alcohol during pregnancy and may have a child or children with Fetal Alcohol Spectrum Disorders formed to support one another."

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FASCETS Fetal Alcohol Spectrum Consultation Education and Training Services

For Families/Caregivers and Individuals - adults and children - with FASD

FASCETS Neurobehavioral Model for FASD (Illustrated)

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The Neurobehavioral Model text: Trying Differently, Rather Than Harder Third Edition. Diane Malbin, MSW. An excellent primer on understanding the brain injury of FASD and how to understand and support a person with FASD in order to meet their fullest potential.

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