Question 1

I am keen to upskill/deliver Professional development to school staff around FASD and FASD-informed practice in the classroom/playground setting. Do you have any key resources that you would recommend to contribute to my understanding and theirs?

Christie Petrenko · Accepted Answer

Several organizations have put together some great resources with particular relevance for educators. Here is a list of resources that might be helpful: 
•	Education & FASD Toolkit: A project of the University of Washington: includes common classroom symptoms of FASD, written resources, and videos.  http://adai.uw.edu/fasdtoolkit/educators.htm 
•	Engaging All Learners: Supporting Students with Fetal Alcohol Spectrum Disorders, a professional learning resource for educators developed by the Edmonton Regional Learning Consortium. Includes written and verbal educational modules directed at educators.  
http://www.engagingalllearners.ca/il/supporting-students-with-fasd/#0
•	Understanding Fetal Alcohol Spectrum Disorders (FASD): A Comprehensive Guide for Pre-K-8 Educators, developed by Duke University. Includes descriptions of FASD through development, case studies, and teaching strategies. https://sites.duke.edu/fasd/
•	The Teacher Toolbox on do2learn: A great practical resource with accommodations and other tools originally developed for teachers for students with FASD. https://do2learn.com/disabilities/FASDtoolbox/index.htm

Question 2

What are the tech/novel interventions for FASD?

Christie Petrenko · Accepted Answer

There are many barriers to receiving FASD-informed care in community settings. One of the largest barriers is the lack of a trained workforce knowledgeable about FASD to deliver interventions. Over the last few years, researchers have begun developing and testing programs that use the internet or mobile phone apps to increase access to interventions. 
•	One example is the Families Moving Forward (FMF) Connect app. The FMF Connect app is being derived from the evidence-based FMF Program that is usually delivered by a therapist with families in their home or clinic. As an app, FMF Connect can be easily accessed by families at times and locations that are convenient for them. To learn more: www.fmfconnect.com 
•	Technology is also being used to increase provider knowledge and competence in carrying out FASD-informed diagnosis and care. Several projects are using an ECHO (Extension of Community Healthcare Outcomes) approach to provide tele-mentoring to providers. You can learn more here: 
o	https://www.urmc.rochester.edu/strong-center-developmental-disabilities/programs/echo-fasd.aspx
o	https://www.bmc.org/addiction/training-education/safest-choice

Question 3

What treatment is available for someone with FASD?

Christie Petrenko · Accepted Answer

Research on interventions is growing in FASD. Studies show that people with FASD and their families benefit from a wide range of interventions. These have included programs focusing on parenting, behavior, self-regulation, safety, academics, and social skills, among others. This is very promising. You can learn more in this free review article: https://pubmed.ncbi.nlm.nih.gov/27742482/.

Here is a list of several of these evidence-based interventions that have accessible materials or provider training available: 
•	Families Moving Forward (FMF) Program: http://familiesmovingforwardprogram.org/
o	The FMF Connect app based on this program is currently being tested and should be available soon in app stores: www.fmfconnect.com 
•	GoFAR: https://do2learn.com/BehaviorManagement/GoFAR/Overview.html 
•	MILE (math intervention): http://msacd.emory.edu/Research/MILE.html 
•	The Alert Program: https://www.alertprogram.com/

The challenge is that many of the interventions studied are not yet widely available in community settings. There are barriers to access. Yet, there are several valuable resources available to help people receive "FASD-informed care." 
•	This important article by Dr. Heather Carmichael Olson describes the components of FASD-informed care: https://link.springer.com/article/10.1007/s40474-015-0056-4 
•	Providers can also read the Treatment Improvement Protocol #58 on FASD-Informed Care published by SAMHSA that is freely accessible online:  https://www.samhsa.gov/resource/ebp/tip-58-addressing-fetal-alcohol-spectrum-disorders-fasd 
•	There are also a growing number of helpful books, trainings, webinars, and in-person and online groups for individuals with FASD and their families. 
Families and other supporters can also advocate for providers in their area to educate themselves on FASD and get training in FASD interventions.

Question 4

How is FASD diagnosed?

Christie Petrenko · Accepted Answer

There are currently several different diagnostic systems for FASD used in various parts of the world. Although the specific criteria and cut-offs vary a bit, the systems are all generally looking at the same symptoms. Efforts are underway to harmonize diagnostic systems, with the ultimate goal of a single system used internationally.

An evaluation for FASD typically assesses 5 areas: 
1.	Prenatal alcohol exposure: what is known about the prenatal alcohol exposure history for the individual is assessed. Exposure must be confirmed for the index pregnancy for some diagnoses on the fetal alcohol spectrum. If exposure is only suspected, the presence of other physical symptoms may be sufficient if other criteria are present. 
2.	Presence of specific facial features: the three subtle facial features include small palpebral fissures (this is the width of the eye opening), smooth philtrum (this is the groove under the nose), and thin vermillion of the upper lip. Two or three of these features need to be present for an individual to meet criteria for this symptom. 
3.	Growth delays: some diagnostic systems include an examination of an individual's growth history. Height and/or weight below the 10th percentile is typically considered positive for this symptom. 
4.	Central nervous system (CNS) anomalies: these are defined as one or more of the following: small head circumference (≤10th percentile), structural brain anomalies, or recurrent nonfebrile seizures. 
5.	Neurobehavioral impairment: assessment of this domain typically involves neuropsychological testing. Most diagnostic systems require functioning in one or more domains of 1.5 to 2 standard deviations below average for the person's age. Domains assessed commonly include intellectual functioning, attention, learning, memory, executive functioning, visual-spatial skills, and self-regulation.

FASD evaluations are commonly done by multidisciplinary teams, but can also be done by a single provider.

The specific FASD diagnostic categories differ according to the characteristics that are present. The table below shows an example using the Hoyme et al., 2016 criteria, which includes diagnoses of fetal alcohol syndrome (FAS), partial fetal alcohol syndrome (pFAS), alcohol-related neurodevelopmental disorder (ARND), and alcohol-related birth defects (ARBD). You can read more about this system here: https://pubmed.ncbi.nlm.nih.gov/27464676/

The Pan-American Health Organization also offers a free diagnostic training workbook that can be accessed here: https://iris.paho.org/handle/10665.2/52216

Question 5

What are the most common symptoms of FASD?

Christie Petrenko · Accepted Answer

From the following article: https://www.rochester.edu/newscenter/fetal-alcohol-syndrome-fasd-survivors-thriving-499312/

12 signs and symptoms common in children and adults with FASD
Symptoms of fetal alcohol spectrum disorders can include:

•	Trouble with learning, memory, and attention span
•	Difficulty communicating, understanding language, decoding meaning
•	Being given to hyperactivity, impulsivity, and other behavioral problems
•	Poorer social skills
•	Vision and hearing problems
•	Specific subtle facial features—small eyes, thin lip, flattened groove (philtrum) under the nose
•	"Failure to thrive" during early childhood, or low height or weight
•	Difficulty following multiple-step instructions
•	Difficulty transitioning from one activity to the next
•	Difficulty with being flexible and adjusting to changes in routine
•	Difficulty regulating emotions
•	Acting younger than chronological age

FASD characteristics are not unique—they are individually present in a variety of other neurodevelopmental and genetic conditions, such as autism spectrum disorder, ADHD, and intellectual disability. Childhood trauma can also play a role. A careful evaluation is important to diagnose and treat FASD.

Question 6

What advice or resources would you offer for parenting children with FASD?

Christie Petrenko · Accepted Answer

I would advise parents to go at their own pace. Processing emotions and learning about the diagnosis takes time. Children with FASD tend to respond best to different parenting approaches than what is commonly used with typically developing children. The most helpful thing to start with is learning to "reframe." Reframing involves interpreting behavior from a neurodevelopmental view. It is recognizing that behavior may reflect a "can't" instead of a "won't." Using what you know about your child's learning profile can help you better understand behavior and put helpful accommodations in place to head off problem behavior. This also creates an environment that is a better fit for the child's needs. The book Trying Differently Rather than Harder by Dianne Mablin can be a very helpful resource to get started in understanding this approach.

Parenting a child with FASD also requires a support system. This can include natural supports such as family members and friends. But it also helps to have a specialized support network of other parents who get it. Other parents raising children with FASD and offer support and ideas when you feel stuck. They can also help you feel like you are not alone. There are many great online support groups. There might also be in-person groups in your area.

A number of national and regional organizations on FASD include webinars and family support networks. Here are a few you might be interested in: 
•	US: https://www.fasdcollaborative.com/ and http://www.fasdunited.org/ 
•	UK: https://nationalfasd.org.uk/ and https://fasd.me/ 
•	Australia: https://www.nofasd.org.au/ and https://www.fasdhub.org.au/ 
•	Canada: https://canfasd.ca/ 
•	Numerous Facebook groups around the world

Question 7

Are there higher rates of FASDs in European countries where drinking alcohol in pregnancy is more accepted?

Christie Petrenko · Accepted Answer

High quality prevalence studies of FASD in school-age children have actually found fairly consistent rates across European and North American countries. Rates are typically within the range of 2 to 5% of the general population (https://pubmed.ncbi.nlm.nih.gov/19731384/). Regions of the Western Cape of South Africa have the highest documented rates of FASD. Communities where binge drinking (4 or more drinks per occasion) is common, tend to have higher rates of FASD.

However, prevalence has not been directly studied in many countries, including those with very high rates of prenatal alcohol exposure. For example, when FASD prevalence rates are estimated (vs. directly measured) based on other factors (e.g., drinking rates), the European region has the highest predicted rates compared to other regions of the world (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5710622/). More work is needed in this area.

In special populations, such as child welfare, the justice system, and mental health settings, prevalence rates of FASD tend to be much higher than in the general population (https://pubmed.ncbi.nlm.nih.gov/30831001/).

Question 8

How do you distinguish between the effects of alcohol in pregnancy and trauma and ACEs?

Christie Petrenko · Accepted Answer

When a child has had both prenatal alcohol exposure (PAE) and traumatic experiences, it is rarely possible to parse effects among these factors. Both PAE and trauma can impact behavior. Other risk and protective factors can contribute too. Heavy PAE often results in difficulties with self-regulation and cognition. When trauma occurs, this vulnerability can make it even harder to process and cope with traumatic experience(s). So for any individual, it is hard to know if a specific behavior is due to PAE or trauma. It can often be due to both factors and their complex transactions over the course of development. Another interesting point is that trauma commonly occurs in infancy and early childhood, before some behaviors and cognitive skills are expected to develop. Trauma can alter brain development and even affect behavior and skills that a person develops later on. You can read more in the National Child Traumatic Stress Network's 12 Core Concepts of Traumatic Stress Responses in Children and Families: https://www.nctsn.org/resources/12-core-concepts-concepts-understanding-traumatic-stress-responses-children-and-families

Knowing that a child has experienced PAE and trauma is important in tailoring interventions for the child and family. Parents, teachers, and providers can educate themselves on the effects of PAE and trauma to inform interventions.

Question 9

How to help mothers with the guilt they experience from drinking early in pregnancy when they didn't know that they were pregnant? Thank you for the work that you do.

Christie Petrenko · Accepted Answer

We as a society need to take action to stamp out the stigma associated with prenatal alcohol exposure. Pregnant people do not drink to harm their babies. There are common reasons prenatal alcohol exposure happens. One of these reasons is an unexpected pregnancy and drinking prior to pregnancy recognition. No matter the reasons for prenatal alcohol exposure, shaming and blaming people does not help. We need to approach mothers and other caregivers from a nonjudgmental, supportive stance. Leveraging strengths, aligning goals and action steps with values, and providing supports as needed will promote parent and child quality of life and well-being. It can also be helpful to connect parents to specialized support networks – other parents with similar experiences who can provide support and encouragement.

Here are some helpful resources regarding this issue:

https://nofas.org/stigma/
https://canfasd.ca/media/media-resources/ 
https://link.springer.com/article/10.1007/s10699-020-09676-y

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