Fetal Alcohol Spectrum Disorders/Prenatal Alcohol Exposure
Click on each title below to see detailed information.
Fetal Alcohol Spectrum Disorders (FASDs) are the leading cause of intellectual disabilities and preventable birth defects caused by the consumption of alcohol by the biological mother during pregnancy.
FASD is not a diagnostic term. It is an umbrella describing a range of effects, including physical, cognitive, behavioral, neuro-developmental, and social deficits, with possible life-long implications.
On the spectrum is the medical diagnosis Fetal Alcohol Syndrome Disorders (FASDs) which is usually made by a dysmorphologist, clinical geneticist, or developmental pediatrician, and requires documentation of all of the following:
1. Three facial abnormalities:
a. a smooth philtrum (the midline groove in the upper lip that runs from the top of the lip to the nose),
b. a thin vermillion (the exposed pink or reddish margin of a lip), and
c. small palpebral fissures (the opening for the eyes between the eyelids)
2. Growth deficits
3. Central Nervous System abnormality (causing learning and behavioral difficulties.)
For a color guide to FASDs facial feature diagnosis visit:
http://depts.washington.edu/fasdpn/htmls/fas-face.htm
FASDs are often a hidden or invisible disability. The majority of persons living with an FASD (approximately 90% in the US) do not meet the physical criteria (growth deficits and facial features) for a diagnosis of Fetal Alcohol Syndrome.
The Institute of Medicine has identified three other diagnoses:
FASD is not a diagnostic term. It is an umbrella describing a range of effects, including physical, cognitive, behavioral, neuro-developmental, and social deficits, with possible life-long implications.
On the spectrum is the medical diagnosis Fetal Alcohol Syndrome Disorders (FASDs) which is usually made by a dysmorphologist, clinical geneticist, or developmental pediatrician, and requires documentation of all of the following:
1. Three facial abnormalities:
a. a smooth philtrum (the midline groove in the upper lip that runs from the top of the lip to the nose),
b. a thin vermillion (the exposed pink or reddish margin of a lip), and
c. small palpebral fissures (the opening for the eyes between the eyelids)
2. Growth deficits
3. Central Nervous System abnormality (causing learning and behavioral difficulties.)
For a color guide to FASDs facial feature diagnosis visit:
http://depts.washington.edu/fasdpn/htmls/fas-face.htm
FASDs are often a hidden or invisible disability. The majority of persons living with an FASD (approximately 90% in the US) do not meet the physical criteria (growth deficits and facial features) for a diagnosis of Fetal Alcohol Syndrome.
The Institute of Medicine has identified three other diagnoses:
- Partial FAS: facial anomalies and other symptoms without all the signs of FAS
- Alcohol-related neurodevelopmental disorder (ARND): Central Nervous System (CNS) defects and behavior problems or cognitive deficits (e.g., speech delays, hyperactivity)
- Alcohol-related birth defects (ARBD): damage to organs, bones, or muscles
Additionally, the neurodevelopmental disorders associated with prenatal alcohol exposure are described in the DSM 5 under code 315.8, “Other NeurodevelopmentalDisorders, Other Specified Neurodevelopmental Disorder.”(p. 86) Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE) is a clinical behavioral diagnosis based on confirmation of alcohol exposure plus impairments in neurocognition, self-regulation, and adaptive function. Professionals who can diagnosis out of the DSM-5 can, with proper training, also diagnose ND-PAE.
More information on ND-PAE diagnosis can be found at:
For more information about fetal alcohol spectrum disorders, visit the FASD United website at www.fasdunited.org and the MCFARES (Michigan Coalition on Fetal Alcohol Resources Education and Support) website at www.mcfares.org
Information of FASD is available at:
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FASD United: www.fasdunited.org (Offers a Family Navigator program, state affiliate |
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The FASD Collaborative Project: www.fasdcollaborative.com (Offers free webinars, support groups, special interest groups, and referrals to resources.) |
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POPFASD: http://www.fasdoutreach.ca (A Canadian organization that offers a lot of |
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www.fasdcenter.samhsa.gov, click on the “Education/Training tab on the right, then scroll down the "FASD - The Basics" link. |
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www.michigan.gov/documents/mdch/Early_On_Service_Coordinator_Guide_for_FASD_8-2011_362477_7.pdf (For 0-3) |
A pre-screen assessment may be completed before making an appointment at a Diagnostic Center (listed below).
The FAS Pre-screen form may be completed online at:
For more information, contact CARE of SE Michigan, (586) 541-2273.
MCFARES highly recommends all providers screen for prenatal alcohol exposure (PAE). The American Academy of Pediatrics released a series of three questions that may be used to get accurate Prenatal Alcohol Exposure (PAE) information:
- How far along were you before you found out you were pregnant?
- Before you were pregnant, did you smoke (how much/how often)? Drink alcohol(how much/how often)? etc.
- After you found out you were pregnant, how much alcohol (or other substances) did you drink/use?
Documentation of this information can provide clinical staff with appropriate information on timing and degree of alcohol exposure prenatally.
Diagnostic Centers in the state of Michigan can be found here:
https://www.mcfares.org/diagnosis
Online trainings are available on the FASD Collaborative Project website:
www.fasdcollaborative.com
Referrals to FASD-informed professionals is available from MCFARES:
info@mcfares.org
The FASD literature strongly recommends against the use of behavior modification strategies. Instead, it is recommended that families get trained in a subplots paradigm (social-ecological; model of disability, which focuses on building knowledge of FASD in the team/family supporting the child, training on preventive/antecedent strategies, supports, and accommodations, and skill building in areas of impairment. More information on best practices in FASD may be found at:
https://pubmed.ncbi.nlm.nih.gov/26380802/ and https://www.rochester.edu/newscenter/how-thinking-about-behavior-differentlycan-lead-to-happier-fasd-families-189582/
Also recommended is that families read the book Trying Differently Rather Than Harder by Diane Malbin: https://www.amazon.com/Trying-Differetntly-Rather-Than-Harder/dp/0972953205
Families may also contact MCFARES (info@mcfares.org) to get families in touch with providers who implement best practices and are FASD-informed.
Online parent support groups for parents/caregivers, birth mothers, birth families. and self-advocates (teens and adults with FASD) are available at: www.fasdcollaborative.com/support
Information about in-person FASD support groups is available from MCFARES, info@mcfafres.org
A legal document that allows for classroom accommodations (e.g., quiet environment for testing, extra time to do homework, etc.) is available from local school districts, usually from a School Counselor or Principal. For assistance in navigating the process for obtaining this document for children with FASD, contact the Michigan Alliance for Families, (248) 834-4597, www.michiganallianceforfamilies.org.
Trained volunteer parents to advocate for the family during Individualized Educational Plan (IEP) meetings are available from MCFARES. For more information, call (586) 329-6722 or emily@mcfares.org
Information, support, and resources for families is available from the Michigan Coalition for Fetal Alcohol Resource Education and Support (MCFARES) Coalition, (586) 329-6722 or go to https://www.mcfares.org/contact