ABOUT FASD

Fetal Alcohol Spectrum Disorder   

 

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

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.

 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:

"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."

*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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The FASD Project

“This film aims to bring awareness and validation to the silent epidemic that intellectually, developmentally and physically impacts more than two times the number of individuals with Autism and is highly preventable. The goal of this film is to provide evidence of this huge public health issue through interviews with scientists, clinicians, psychologists, educators, social workers, representatives of the judicial system and most importantly, parents and family members of individuals with FASD.” FASD Project.

For more information visit The FASD Project.

 

 

 

 

 

 

 

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 

ND-PAE - Neurodevelopmental Disorder - Prenatal Alcohol Exposed DSM V

* Also known as Alcohol Related Neurodevelopmental Disorder (ARND
For more information see below "FASD Diagnosis"

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.

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. (NIH/NIAAA)

 

One in seven pregnant adults in the U.S. report drinking alcohol in the last thirty days, 5.2%  report binge drinking. Of those pregnant women who use opioids non-medically, 51.2% binge drink alcohol. According to the most recent Maine statistics from the CDC: 
 

  • 62.6% of women aged 18-44 drink alcohol

  • 35.3% of women who drink, binge drink

  • 48% of pregnancies are unintended

  • 11,770 live births

  • In 2018 one in ten pregnant women in Maine reported drinking in the last trimester.*  

                                         *Maine State Epidemiological Outcomes Workgroup (SEOW)       

Alcohol is a teratogen. All teratogens, such as lead or thalidomide, cause birth defects. Alcohol 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 alcoholAlcohol 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.

Only 10% of individuals with FASD have facial abnormalities. Facial abnormalities (and the associated 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.

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

  • 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

  • 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

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

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

PROOF Alliance

FASD Fact Sheets

How do I know if I have an FASD?

PROOF Alliance Video on Current FASD Awareness

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

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. Centers for Disease Control and Prevention data indicate that approximately 12% of pregnancies may have alcohol exposure. 

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.

The University of Washington FAS Diagnostic and Prevention Network

"The Washington State Fetal Alcohol Syndrome Diagnostic & Prevention Network (FAS DPN) started out as a single FASD diagnostic clinic at the University of Washington in Seattle in 1993. It was sponsored by the CDC as a FASD primary prevention study. The clinic expanded into a statewide network of interdisciplinary FASD diagnostic clinics led by the core clinical/research/training clinic at the Center on Human Development and Disability at the University of Washington in Seattle, WA."

4 Diagnoses Across the Fetal Alcohol Spectrum  

ND-PAE  Neurobehavioral Disorder - Associated with Prenatal Alcohol Exposure

DSM 5

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

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."

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 

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

Kalberg, Wendy O., et al. Early-Life Predictors of Fetal Alcohol Spectrum Disorders. Pediatrics. 2019;144(6)e20182141

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

Hoyme, Eugene,H., et al. Updated Clinical Guidelines for Diagnosing Fetal Alcohol Spectrum Disorders. Pediatrics. 2016;138(2)e20154256

FASD Intervention

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."

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

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

 

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

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

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

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.

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.

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."

The Change Starts Here Collaborative

OUR MISSION

We help families and professionals working with individuals with brain-based disabilities to feel confident and supported by providing a library of resources and a sense of community so that they are empowered in supporting these individuals and advocating for their own needs.

Information and Training

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)

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.

 

FASD chart

FAFASD Families Affected by Fetal Alcohol Spectrum Disorder 

  

FAFASD presents trainings about caring for, living with, working with, and supporting people with FASDs using the neurobehavioral (brain-based) model. 

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

PROOF Alliance Fact Sheets

FASD in Adulthood

Understanding Behaviors of FASD

How do I know if I have an FASD?

FASD Support Network of Saskatchewan  FASD Tips for Parents and Caregivers 

Resource for parents, caregivers, teachers, and therapists

Brief Videos on Understanding FASD

The Provincial Outreach Program for Fetal Alcohol Spectrum Disorder (POPFASD) is funded by the British Columbia Ministry of Education and has been in existence since 2006. A multi-district Steering Committee offers advice, direction and feedback. The mandate of our program is to increase educators’ capacity to meet the learning needs of students with Fetal Alcohol Spectrum Disorder.
 

Videos sponsored by POPFASD. Presented by Dan Dubovsky MSW (formerly of SAMHSA FASD Center for Excellence) Presented in 2017.

Current prevalence of FASD in the U.S., as many as 5% of children, 1/20.

What is FASD

The Approach

 

Reward and Consequences

Strategies for Improving Outcomes

Comparing ODD, ADHD, FASD

Common Strengths of Students with FASD

FASD Prevention

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."

FASD United (Formerly NOFAS   National Organization on Fetal Alcohol Syndrome)

The Myth of Light Drinking During Pregnancy(Video)

Doctors, psychologists, epidemiologists, and researchers speak to the risk of prenatal alcohol exposure at any level.

NOFAS Resource Page on Myth of Light Drinking

PROOF Alliance

Drinking Alcohol Before and During Pregnancy

State of Maine DHHS  Maine MOM (Maternal Opioid Misuse Initiative)

CDC      Collaborative for Alcohol-Free Pregnancy

ACOG   American College of Obstetricians and Gynecologists

Fetal Alcohol Spectrum Disorders Prevention

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