FAQS on FASD
What is the difference between FAS/pFAS, FAE, ARND and FASD?
Fetal alcohol syndrome (FAS) was first coined in 1973 to describe individuals who had been prenatally exposed to amounts of alcohol and demonstrated a particular pattern of facial characteristics, growth delay and brain impairment.
Fetal alcohol effects (FAE) and possible FAE were terms used to describe an individual who had been prenatally exposed to alcohol and demonstrated concerns in brain development, but did not demonstrate the same facial characteristics and/or growth delay as those diagnosed with FAS.
Research has since shown that only a minority of individuals prenatally exposed to alcohol will actually demonstrate any facial anomalies or delayed growth. The diagnosis of FAS, using these criteria, was missing many individuals who had an invisible disability but still required significant support.
Fetal alcohol spectrum disorder (FASD) was developed as an umbrella term to capture broader range of disabilities that can occur from prenatal alcohol exposure. While the diagnosis of FAS was still valid, the term FAE fell out of use. Individuals who were once referred to as having FAE or possible FAE would likely be diagnosed with partial fetal alcohol syndrome (pFAS) or alcohol-related neurodevelopmental disorder (ARND).
In December 2015, the new Canadian guidelines for diagnosing FASD across the lifespan were published, changing the terminology again. Fetal alcohol spectrum disorder (FASD) is now a diagnostic term in Canada, differentiating FASD with or without sentinel facial findings. The umbrella terminology of FASD is still used in the United States and other parts of the world, and is therefore found in most resources.
What are the main differences of the 2015 Canadian diagnostic guidelines?
The revised Canadian "Fetal alcohol spectrum disorder: A guideline for diagnosis across the lifespan" was published in CMAJ on December 14, 2015. The new guideline builds on the original 2005 edition, though more specifically addresses assessment of infants, young children and adults.
The new guideline has implications for diagnostic terms and criteria, as well as informing prevention and screening, and support services for individuals prenatally exposed to alcohol. Please read the full article for more information.
FASD is now a diagnostic term
The new two diagnostic terms include:
Fetal alcohol spectrum disorder with sentinel facial findings (i.e. short palpebral fissures, smooth philtrum, and thin upper lip, as associated with prenatal alcohol exposure)
Fetal alcohol spectrum disorder with no sentinel facial findings
New designation for infants and young children
It has been historically difficult to diagnose infants and young children with FASD as diagnosis requires evaluation of multiple areas of brain functioning, some of which cannot be evaluated until the child reaches school age. This gap prevents some early intervention which is critical for development.
Under the new guideline, infants and young children can be diagnosed with FASD with sentinel facial findings if they display the three facial characteristics associated with prenatal alcohol exposure, as well as have a small head circumference which indicates differences in brain development.
Infants and young children who do not meet the diagnostic criteria for FASD but have confirmed prenatal alcohol exposure and early signs of developmental concerns can be designated as "At risk for neurodevelopmental disorder and FASD, associated with prenatal alcohol exposure."
This designation is intended to encourage early intervention. However, it is not a diagnosis of FASD. A child who receives this designation should be re-assessed by a multidisplinary team when he or she reaches school age to determine if he or she now meets the diagnostic criteria for FASD.
Growth removed from diagnostic guideline
While delayed growth is significant to understanding of a person's development, it is not as common as once believed and not specific to prenatal alcohol exposure. If a person displays delayed growth, that is considered in the medical evaluation, but is no longer part of the diagnostic formulation for FASD.
New brain domain called affect regulation
There is a newly added tenth brain domain in the 2015 guideline entitled affect regulation. This domain is based on emerging research that evidences individuals with prenatal alcohol exposure are predisposed to certain mental health concerns, irrelevant of other biological or environmental factors. The affect regulation captures anxiety, depressive, and mood dysregulation disorders. While each can be caused by other factors, they may be considered relevant to prenatal alcohol exposure when seen in combination with other neurodevelopmental areas of FASD.
Redistribution of other brain (neurodevelopmental) domains
The 2015 guideline considers ten domains. They include:
- Neuroanatomy/neurophysiology (refers to brain structure)
- Motor skills (redefined and renamed from hard and soft neurological signs; sensory integration removed from diagnostic criteria, though still relevant to a person's abilities)
- Language (renamed from communication)
- Academic achievement
- Attention (redefined and renamed from ADHD)
- Executive function (expanded and clarified, now includes impulse control and hyperactivity)
- Affect regulation (new domain, reflects anxiety, depressive, and mood dysregulation disorders)
- Adaptive behaviour, social skills or social communication
How can I tell if a person has FASD?
Most people with FASD have no outward signs of the challenges they face. Concerns are primarily demonstrated through learning and behavioural symptoms such as difficulties with memory, abstract language, daily living skills and reasoning. Only a specially trained physician can diagnose FASD because each individual presents so uniquely, but you can read more about FASD to help you better understand some of the common symptoms. If you have questions about a child, youth or adult in your care, it is strongly recommended to refer them for a full assessment in order to get a better understanding of their strengths and needs whether or not they receive an alcohol-related diagnosis.
Can a father's drinking cause FASD?
The only cause of FASD is maternal alcohol use in pregnancy; mothers share a blood connection with the fetus throughout gestation and therefore have the most significant impact on development through nutrition and lifestyle. There are other factors than can impact development (i.e. developmental stressors), such as other substance use, paternal alcohol use, alcohol use in breastfeeding and more, but these effects are not included in the terminology of FASD.
Research has determined that if a man drinks significant amounts of alcohol prior to conception, this can affect his sperm particularly in the area of sperm motility and his ability to reproduce. While there have been preliminary studies indicating a link between paternal alcohol consumption and negative childhood outcomes, more research is required to determine the amounts and patterns of exposure found to be harmful, and the potential type and severity of effects.
What we do know is that the main indicator of whether or not a woman will be able to abstain from alcohol throughout her pregnancy is whether or not she has the support of her partner, friends and family. Fathers play a critical role in the prevention of FASD.
Does alcohol affect breast milk?
The American Academy of Pediatricians recommends that mothers should avoid drinking alcohol during breastfeeding, because it passes through their milk to the baby.
The National Institute of Child Health and Human Development conducted a study in which they detected significant differences in motor development at one year of age in babies subjected regularly to alcohol through breast milk, and recent research (Jansson, 2018) further shows delays in abstract thinking in children exposed to alcohol through breast milk. The National Institute on Alcohol Abuse and Alcoholism further disproved common beliefs that alcohol use aids lactation; in fact, alcohol use reduces milk production and impacts the infant's sleep.
Health professionals recommend that the best course of action is to not drink at all while breastfeeding, in order to eliminate risk to the child during this time of still rapid brain development. Storing unaffected breast milk or expunging affected milk may be options for some women.
Can you make a diagnosis without a mother confirming prenatal alcohol use?
The assessment team cannot make an alcohol-related diagnosis without confirming prenatal alcohol exposure. This information may come from the person's mother, other family members, birth records, facial characteristics associated with prenatal alcohol exposure, or other credible means.
If a person is not connected to his or her birth family, it may be difficult to gather this information. If there is no confirmation, an alcohol-related diagnosis will not be made. However, a comprehensive assessment will still help the person and his or her support network understand the individual's unique abilities and needs. Many services can be accessed with or without the alcohol-related diagnosis, if the person meets other criteria for support.
My child was diagnosed in the past. Can I get a re-diagnosis for my child?
The key to this question is understanding the difference between an assessment and a diagnosis. An FASD diagnosis only needs to be made once in a lifetime, assuming it meets the Canadian guidelines. However, a person's abilities and needs change throughout their lifespan, and an updated functional assessment to evaluate the person's needs may be beneficial. If the person's abilities have not been recently assessed, you may want to consider a psychology and/or speech-language assessment.
In other words, it is unlikely that what you want is a re-diagnosis, unless it is a second opinion that you are after, or the original diagnosis was made prior to the original Canadian Guidelines for Diagnosis were implemented in 2005 and there is a question of its validity according to the multidisciplinary team model (where each member of the assessment team is a specialist in his or her field, and can provide valuable insight into all aspects of the person's abilities). It is more likely that you want to find out more about the person's abilities and areas of challenge, including what services the person might be able to access as he or she gets older.
A functional assessment is generally completed by a psychologist privately or in community services, and may also include a speech-language or mental health component.
How much does an assessment cost?
FASD is a medical diagnosis that impacts a person across their lifespan, that can be addressed for improved health and wellbeing. The Asante Centre is committed to working with health and social systems to increase access to public diagnostic assessments as part of broader health initiatives. Private assessments are offered in response to current gaps for families who require more urgent service, or do not fit into current public options.
The costs associated with a private assessment can vary greatly depending on the assessment needs. The Asante Centre is a not-for-profit agency, which means we are a charitable organization. The Centre is committed to working to find continued funding in order to keep assessment costs to a minimum. Exact costs of assessment are determined as a client proceeds through the initial referral process.
Glossary of Terms
Emotional control. Your ability to connect what she thinks and knows to how she feels and reacts. Poor emotional control might cause a person to overreact or respond inappropriately to things that upset them. For example, if a child loses their video game time because they didn’t finish their chores, they may have a tantrum because their siblings still have their game time.
At risk for neurodevelopmental disorder and FASD, associated with prenatal alcohol exposure.
A designation for infants and young children who do not meet the diagnostic criteria for FASD but have confirmed prenatal alcohol exposure and early signs of developmental concerns. Children with this designation should be re-assessed at school-age to determine if they meet FASD diagnostic criteria.
Auditory working memory
The ability to hold onto information you hear long enough to use it. It’s what helps you remember the five words you just read so you can understand how they fit together in a sentence. It’s also what helps you remember a phone number someone just said to you long enough to dial it.
The many ways your brain automatically makes sense of things. When experts refer to cognition or to cognitive skills, they mean how you think, know, remember, judge and problem-solve.
A set of mental skills that help you complete tasks. Examples include: time management, paying attention, etc.
FASD with Sentinel Facial Features
Diagnostic criteria include: Confirmed prenatal alcohol exposure, the presence of all 3 characteristic facial features (short palpebral fissures, smooth philtrum, thin upper lip), and evidence of impairment in 3 or more of the following central nervous system (CNS) domains: Neuroanatomy/neurophysiology (refers to brain structure), motor skills, cognition, language, academic achievement, memory, attention, executive function, affect regulation (reflects anxiety, depressive, and mood dysregulation disorders), adaptive behaviour, social skills or social communication.
FASD without Sentinel Facial Features
The diagnostic criteria include: Confirmed prenatal alcohol exposure and evidence of CNS impairment as above.
The ability to think of alternate ways of doing things, integrate new ideas into existing thinking, and abandon what isn’t working to try a new approach. If a person has difficulty seeing other viewpoints or gets stuck on ideas even if they’re not the best plans, experts might describe that person as a “rigid thinker.”
Physical structure of the brain and nervous system.
The way the neurological system functions.
The ways a person gathers and stores information to use in the future. It’s not just about lining things up or putting them away. They’re also referring to how a person stores and manages information in their brain so they can pull it out of their mental filing cabinet when they need to use it.
The ability to keep track of performance on a task, assess how it measures up to a goal, and catch and correct mistakes.
The ability to get started on an activity and come up with ideas or problem-solving strategies on your own. For example, a person may not be able to initiate the task of cleaning their room because they can’t figure out the first thing to do or any of the steps after that.
Visual-spatial working memory
The ability to use your “mind’s eye” to hold onto visual information long enough to use it. Visual-spatial memory is like a camera in your brain. It can take snapshots to help you do things like search through laundry to find a sock that matches one you’ve seen before. It helps you recall where new things are and where you are in relation to them—for example, finding the bathroom in the middle of the night at a friend’s house without bumping into walls.
The ability to hold onto information in order to complete a task or activity. Working memory is a combination of auditory and visual-spatial memory, and relies on attention skills, too. If you have weak working memory skills, things may “slip your mind” or be “right on the tip of your tongue.”