Fetal Alcohol Spectrum Disorders (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. The term FASD is not intended for use as a clinical diagnosis. An individual would not receive a diagnosis of FASD.
There are however, four diagnoses that fall under the umbrella of FASD: FAS, Partial FAS, Static Encephalopathy/Alcohol Exposed (SE/AE) and Neurobehavioral Disorder/Alcohol Exposed (ND/AE).
- Fetal Alcohol Syndrome (FAS) is a birth defect syndrome caused by maternal alcohol consumption during pregnancy.
FAS is characterized by:
- growth deficiency (height or weight < 10th percentile).
- a unique cluster of minor facial anomalies (small eyes, smooth philtrum, thin upper lip).
- severe CNS abnormalities (structural, neurological, and/or functional abnormalities).
- prenatal alcohol exposure (confirmed or unknown).
Partial FAS is a diagnostic classification for patients who present with:
- most, but not all, of the growth deficiency and/or facial features of FAS.
- severe CNS abnormalities (structural, neurological, and/or functional abnormalities).
- prenatal alcohol exposure (confirmed).
Static encephalopathy/Alcohol Exposed (SE/AE). The term "encephalopathy" refers to "any significant abnormal condition of the structure or function of brain tissues" (Anderson, 2002). The term "static" means that the abnormality in the brain is unchanging; neither progressing nor regressing. This diagnostic classification is for patients who present with:
- severe CNS abnormalities (structural, neurological, and/or severe functional abnormalities).
- prenatal alcohol exposure (confirmed).
Neurobehavioral Disorder/Alcohol Exposed (ND/AE) is a diagnostic outcome classification for patients who present with:
- moderate CNS dysfunction.
- prenatal alcohol exposure (confirmed).
Neurobehavioral Disorder-Prenatal Alcohol Exposed (ND-PAE) is a diagnostic outcome classification recently introduced by the DSM-5. It essentially replaces the term ARND and adopts the "outcome-exposure" approach to nomenclature. Confirmed prenatal alcohol exposure is required.
Common Symptoms
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, cleft palate, etc.
- 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, lower than expected adaptive intelligence
- 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
Clinical Guidelines
All children should be screened for prenatal alcohol exposure when obtaining a birth history from the parent during routine pediatric care. Screening for prenatal alcohol exposure is especially important for children who have developmental delays or behavioral challenges.
If a diagnosis of an FASD is suspected, a referral to a professional with experience and training in FASD evaluation is critical to FASD informed care. The SAFEST Choice Learning Collaborative is FASD provider training through Boston Medical Center and PROOF Alliance. Maine providers who have completed the SAFEST Choice training.
Treatment should focus on early intervention, school evaluation and support services, and behavioral management including psychopharmacologic interventions if indicated. Behavioral challenges in children with FASD should be seen as part of the greater neurological impairments that result from prenatal alcohol exposure. These behavioral challenges should not be attributed solely to the secondary psychiatric disabilities that attend fetal alcohol spectrum disorders such as attention deficit disorder, oppositional defiant disorder, or conduct disorder.
Diagnostic Tools & Screenings
American Academy of Pediatrics FASD Program
AAP FASD Toolkit
AAP FASD Live Webinar
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. The FASD REAL Champions are available to provide training to pediatricians within their AAP district. 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
Provider Information & Resources
Screening for Prenatal Alcohol Exposure: An Implementation Guide for Pediatric Primary Care Givers
https://www.aap.org/en-us/Documents/FASD_PAE_Implementation_Guide_FINAL.pdf
This implementation guide offers an evidence-informed method to determine a history of PAE and is intended to support pediatricians and other pediatric clinicians in facilitating early identification of children who are at risk for one of the FASDs.
SAMHSA TIP 58 Addressing Fetal Alcohol Spectrum Disorders (FASD)
https://www.samhsa.gov/resource/ebp/tip-58-addressing-fetal-alcohol-spectrum-disordersfasd
Fetal Alcohol Spectrum Disorders (FASD) is a non-diagnostic umbrella term describing the range of effects that can occur in an individual whose mother consumed alcohol during pregnancy. These effects may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications. FASD affects up to 5% of the population, yet is 100% preventable. As is discussed in greater detail later in this TIP, these disorders often co-occur with substance abuse and mental health issues, and generally require treatment modifications for successful outcomes.
Possible diagnoses within the spectrum include Fetal Alcohol Syndrome (FAS), Partial Fetal Alcohol Syndrome (pFAS), Alcohol- Related Neurodevelopmental Disorder (ARND), Static Encephalopathy/Alcohol- Exposed (SE/AE), and Neurobehavioral Disorder/Alcohol Exposed (ND/AE). SAMHSA’s goal is to provide knowledge and assistance to help substance abuse and mental health treatment programs better serve their clients. Providing FASD-informed services is a part of that mission, and is the guiding principle behind the publication of this TIP. Thank you for taking the time to read this publication, and for potentially making a difference for a population that should not remain hidden any longer.
From the FMF site: The families moving Forward (FMF) Program is a behavioral consultation intervention delivered by trained providers. The treatment can be customized to match the needs of the many different families. FMF was tailored for families raising children 3-12 years with prenatal exposure (PAE) or fetal alcohol spectrum disorders (FASD, who have clinically concerning behavior problems. This group of families often feels caregiving stress, and seeks mental health care –or aftercare following an FASD diagnosis. Yet providers are often uncertain how to best serve them.
The FMF Program offers a specialized intervention approach which providers can learn through telehealth or in-person training. There is a carefully laid out program manual, accessible after training on a password-protected website. Clinically, the FMF Program combines positive behavior support techniques with motivational interviewing (MI) and cognitive-behavioral treatment (CBT). The FMF Program is scientifically validated through research.
The FMF Program offers: (1) caregiver support and coaching; (2) psychoeducation on effects of PAE, treatment-relevant FASD information, and advocacy; (3) skill-building in caregiver use of “proactive” parenting strategies (“accommodations”); and behavior planning; and (4) information on “looking forward” to the future. Targeted school and provider consultation, and community resource linkages, are also offered. The FMF Program aims to improve child and parent outcomes. FMF treatment emphasizes better child function and decreased child disruptive behavior— and improved caregiving attitudes, knowledge, and use of targeted parenting practices. The FMF Program also aims to meet important unmet family needs.
Parent & Family Information
FASD United (Formerly NOFAS National Organization of Fetal Alcohol Syndrome)
NOFAS educates the public, practitioners, and policymakers about the risk of prenatal exposure to alcohol, drugs, and other substances known to harm fetal development including tobacco, marijuana, heroin and other opioids, cocaine, and methamphetamine, recognizing that these substances are often used simultaneously. NOFAS supports individuals and families living with FASDs through referrals, advocacy, training for professionals, information dissemination, and a wide range of diverse initiatives and resources.
PROOF Alliance (NOFAS Minnesota Affiliate)
Since 1998, we have had a dual purpose: providing education on the impact of alcohol use during pregnancy, which can encompass a lifetime of physical, mental and behavioral disabilities, and championing efforts to enable individuals living with an FASD to reach their full potential. Proof Alliance works to eliminate birth defects caused by alcohol consumption during pregnancy and to improve the quality of life of the individuals and families affected by FASD by providing resources and support. By building partnerships and improving services, Proof Alliance generates awareness of the importance of alcohol-free pregnancies.