fasd maine
The SAFEST Choice
Learning Collaborative
ECHO Education 2023-2024
For health centers that serve
prenatal through adolescent patients.
This partnership between Boston Medical Center and Proof Alliance aims to reduce prenatal alcohol exposure and improve outcomes in children with a suspected or diagnosed FASD.
Since 2021, we have trained approximately 40 clinics from 9 states using virtual education to engage healthcare teams in the Northeast and the Upper Midwest.
By becoming a SAFEST Choice Learning Collaborative participant, each health center will receive:
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Free continuing education credits (physicians, nurses, psychologists, social workers, certified counselors) and MOC Part 2 credits (some of the content can be used to fulfill the new DEA substance use disorder training requirement)
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Access to a diverse, interprofessional team of national experts in the fields of FASDs, addiction, maternal medicine, developmental pediatrics, and more
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A health center stipend
Video: Maine SAFEST Choice participants share their experience at 34:40
More information
Study shows the long-term effects of fetal alcohol exposure on brain development
"Results obtained with this approach showed that a common outcome of ethanol-induced apoptosis (cell death) is immediate and lasting neuron loss. Comparison between regions showed that neuron loss was most pronounced in the anterior dorsal thalamic nucleus..."
FYI:The anterior nucleus of thalamus (ANT) is a key component of the hippocampal system for episodic memory...the ANT may also contribute to reciprocal hippocampal-prefrontal interactions involved in emotional and executive functions... Clinical and experimental evidence indicate that damage of the ANT or its inputs from the mammillary bodies (part of limbic system) are primarily responsible for the episodic memory deficit observed in Wernicke-Korsakoff syndrome and thalamic stroke. Experimental models also indicate that the ANT may have a role in the propagation of seizure activity.
Podcast Series
Boston University
Access two seasons of "Alcohol and Pregnancy: The More You Know", each with three distinct episodes, exploring the many facets of this topic. Episodes include:
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Interviews with experts in the field
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People with lived experience
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Patient advocates
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Demonstrations of difficult patient conversations
Free continuing education credits are available, select this link to listen!
If you do not need continuing education credit, listen on Spotify, Apple, or Amazon Music.
The FASD Respect Act is legislation addressing Fetal Alcohol Spectrum Disorder (FASD) on a national level, re-introduced during the 2023-2024 118th Congressional Session.
This bill will continue the work done in the 117th Congress by thousands of advocates and lawmakers to pass meaningful legislation that will positively impact the lives of people diagnosed with FASD or prenatal substance exposure.
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Provide a standard case definition for FASD
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Promote and fund Education, Awareness and Services across community agencies and systems of care for infants to adults
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Provide funding to State and Tribal Systems for FASD Services throughout the lifespan
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Create Centers for Excellence to guide States and other systems of care in expanding diagnostic capacity, public awareness and outreach about FASD, and provide training and technical assistance on prevention, as well as supports and interventions for people diagnosed with FASD
Reach out to Maine lawmakers here
Fetal Alcohol Exposure,
Emma Yasinski
UNDARK January 30, 2021
Research-based interventions for children with fetal alcohol spectrum disorder exist, but few children get access.
Epidemiologist Dr. Annika Montag and her team conducted a study, published September 2022, for which they screened kids who were receiving services at their local community center for diagnoses such as autism or ADHD, and found that about 7 percent of them likely had an undiagnosed FASD. “The takeaway is children have not been diagnosed with FASD, despite being under medical care,” said Montag. They’re not getting optimal care.”
“If you’re trying to match a strategy to a student, you’ve got to know what you’re looking at,” said Rachel Feiler Teacher/Researcher in California. I’ve seen students I thought might have FASD but I’ve never had an IEP, an individualized education plan, come to me with that diagnosis in it. Ever."
FAQs
Prenatal Alcohol Exposure
Why is light drinking a problem?
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Watch this to learn more from experts and individuals with lived experience
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Watch this to learn how alcohol effects each person and pregnancy differently
Why is alcohol such a damaging substance?
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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.
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Read this to better understand how one could not have designed a substance with more capacity to cause damage, given the perfect storm of factors: alcohol's chemical composition, the nature of fetal development, the physiology of the human body, placenta, and amniotic fluid.
Do the effects of prenatal alcohol exposure continue into adulthood?
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Learn more here about FASD across the lifespan and how to support the strengths and abilities of those affected.
(Thank you CANFASD)
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Watch this interview with a person diagnosed with FASD in mid-life.
Is alcohol use/prenatal alcohol exposure a concern in Maine?
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Maine has one of the highest rates of alcohol use among childbearing aged adults (62%).
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Maine's overall rate of alcohol use among pregnant adults is 10%, in six of our sixteen counties the rate is 10% and higher, as high as 16.5% (1/6) in Cumberland County
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Unintended pregnancy rate 36%
What can we do to help?
So much!
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Read this to learn about stigma
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Go to FASD United to see how our own attitudes and behavior can create barriers for those seeking support in pregnancy
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Many simple effective tools are available to family members, providers, or clinicians - OB/GYN practitioners, Family Medicine,
Pediatric practitioners,
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Maine providers can participate in the SAFEST Choice Learning Collaborative
For more information about
FASD Myths and Facts
75% of children with an FASD have an attention problem and may be diagnosed with ADHD without considering other diagnoses. Attention deficits in children with an FASD without ADHD may derive from deficiencies in executive functioning skills, short-term memory, the ability to shift attention, slower processing speed. Medications for ADHD may worsen symptoms in children with FASD.
11 yo child with parent concerns about attention, hyperactivity, and sleep
Fetal alcohol spectrum disorder (FASD) is one of the most common neurodevelopmental disabilities in the Western world and yet it remains a highly misunderstood, multi-faceted brain and body disability that affects many people in our communities. This lack of understanding about the complexities of FASD leads to blaming, shaming, stigma, discrimination and racism that causes harm to people with FASD and their families. It also leads to people with FASD getting almost no supports or services. We all need to be more informed, understanding and supportive of children and youth with FASD and their families.
CANFASD
Read recently published research and reports on FASD
Families Moving Forward (FMF)
FMF training teaches professionals to deliver this scientifically validated intervention program to families.
Organizations can train multiple clinicians and supervisors to become an FASD-informed agency offering the FMF Program.
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Learn scientifically validated strategies to help children living with PAE and/or FASD and their families
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Gain a thorough understanding of FASD & PAE, including associated stigma, from leading psychologists in the field
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Practice and support in using actual session materials to become comfortable with the clinical process
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Access to the online FMF Portal for full intervention materials specially designed for this clinical population
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Be a PAE and FASD-informed provider
A Conversation
with Dr. Douglas Waite MD
AAP FASD Champion
Chief of Developmental Pediatrics of the BronxCare Health System
If you want to better understand and help your child or patient affected by prenatal alcohol exposure/FASD, and find hope and encouragement, please listen to this podcast.
You will and learn about hallmark features of the brain injury of FASD:
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memory deficit
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dysregulation
You will see how these seemingly discrete symptoms are clues leading to an accurate diagnosis, a brain injury that requires FASD-specific support.
You will understand:
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support and tools that help these families manage the challenges and rewards of caring for someone with an FASD
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abandon ineffective practices based on lack of understanding of the disability of FASD
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protective factors that help individuals with FASD build on their strengths and interests in order to learn new skills which help them accommodate their weaknesses and reach their developmental and educational potential.
Resources for:
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education in treating common co-morbid disorders - anxiety, emotional lability
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family support
Value of:
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choline supplementation
prenatally and in young children
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screening for polysubstance use/concurrent alcohol use
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an open mind
For Educators
Brief video on importance of FASD awareness in our school systems. A feasible and inspiring approach.
The 8 Magic Keys to supporting those affected by PAE/FASD
6 Things Educators and School Staff Should Know About FASD
Nate Sheets 8:00 Video
to Manage Escalation
Nate Sheets 8:00 Video
What Educators Need to Know Myles Himmelreich
Person with an FASD
FASD Activist
6:30 Video
8 Things I Wish My School Knew About Me
Eileen Devine LCSW
Understanding Fetal Alcohol Spectrum Disorders
Duke University
In March 2017, the Duke Center for Science Education, Duke Institute for Brain Sciences, and Duke Program for Education presented a symposium for K-8 educators, school psychologists, and nurses on understanding and educating children affected by fetal alcohol spectrum disorders (FASDs).
For more information on FASD and the Duke Symposium-recording here
Understanding Fetal Alcohol Spectrum Disorder:
What Educators Need to Know
It is acknowledged in FASD, that strategies that may work well one day, may not work the next day. This said, it can be very helpful for educators to simply know that this can be appraised through the lens of FASD. Knowing why a child is not responding as expected can be helpful but it is important as educators to work alongside the child and view the challenges they face through the lens of brain differences and not simply as behavioral issues.
Popova, Svetlana, et al.
Special Education for Children with FASD. Exceptionality.2016 Jul 2;24(3):165–175
Individuals with FASD
Speak Up
“Being informed helps people understand and accept their condition so they can understand and accept themselves,” said Myles Himmelreich, an FASD activist and researcher who also has an FASD.
"Being able to talk to someone with FASD about these shared experiences can empower people to help and mentor others,” he added.
A person with FASD
shares their experience
with other
FASD Changemakers
Another presentation by
People with FASD share their stories
In this two-minute video, Kiera Knowlton, a young woman with Fetal Alcohol Spectrum Disorder (FASD), discusses FASD and some of the ways it can affect individuals who have this disability. Kiera explains why an accurate diagnosis is so important - allowing the individual with FASD to access appropriate support, make the most of their talents and strengths, and build the best life for themselves.
Thriving While Living with FASD
University of Rochester Psychologists make the case for an approach to FASD based on strengths rather than deficits
Neurobehavioral Disorder Associated with
Prenatal Alcohol Exposure
(ND-PAE)
The journal Pediatrics has published a report to help healthcare providers identify, diagnose, refer, and care for children and youth with behavioral problems caused by alcohol exposure during pregnancy.
Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE) was first included as a recognized condition in the DSM 5 of the American Psychiatric Association (APA) in 2013. It is one of the group of conditions that can occur from being exposed to alcohol during pregnancy. This group of conditions is known as Fetal Alcohol Spectrum Disorders (FASDs). FASDs are physical, behavioral, and intellectual disabilities that last a lifetime. However, early diagnosis and evidence-based neuro-developmentally aware support greatly improves outcome.