LEARN ABOUT FASD
Fetal Alcohol Spectrum Disorder (FASD) is an important health issue in Canada. The term FASD describes a disability that can occur in infants, children, youth or adults exposed to alcohol while in the womb. You might also hear phrases like prenatal exposure to alcohol, exposure to alcohol before birth, or hear FASD described as occurring when alcohol is consumed during pregnancy.
When alcohol is used while pregnant, the fetus is exposed directly to alcohol through the bloodstream. Alcohol can interfere with growth and development of all fetal body systems. The developing brain and central nervous system (CNS) are especially at risk to the harms of alcohol. In addition, because the brain and CNS develop during the entire nine months of pregnancy, the harm can happen over an extended time.
The diagnoses are:
-
FASD with sentinel facial findings
-
FASD without sentinel facial findings
-
At Risk for Neurodevelopmental disorder and FASD
These diagnoses include mild to severe disabilities. The disabilities can be a mix of cognitive (thinking), behavioural (actions), physical (body or health) or sensory (vision, touch, hearing) disabilities. Disabilities caused by direct exposure to alcohol in the womb are called primary disabilities. They are present from birth, permanent and are different for everyone.
How Common is FASD?
Even though alcohol use is common, we do not fully understand the costs, both personal and to the community, of alcohol misuse. When learning about the risks of alcohol use and FASD most people want to know what the scope of the problem is. They want to know the rates of FASD. Based on the current research, it is estimated that 4% of the Canadian population lives with FASD. Another way to understand this is that approximately 1,451,600 people in our country have FASD. For more information about current research on FASD visit CanFASD's website.
FASD is a Lifelong Disability
FASD is a disability that lasts through the entire lifespan. The primary disabilities linked with FASD are permanent. The damage caused to the brain does not lessen or improve, even as the person gets older. However, their behaviour may change with support, effective strategies and improved understanding.
FASD is a Hidden Disability
Some primary disabilities like facial characteristics, poor growth or obvious changes in brain functioning are visible in people affected by FASD. For most individuals, FASD is a disability that is hidden from others. At birth and throughout life it is often hard to see the range of permanent impairments caused by prenatal alcohol exposure.
Because we cannot see the physical changes to the brain or the changes in brain functioning, FASD is called a hidden disability. What is most problematic is that the inability to see the impacts of FASD creates a barrier to acceptance and understanding. As a result, children, youth and adults with FASD do not get the support they need.
FASD is a Brain-Based Disability with Behavioural Symptoms
Even though alcohol can permanently damage the developing cells of every body system, the human brain is the organ most sensitive to the effects of alcohol exposure. Much of the injury linked with FASD occurs in the central nervous system which is comprised of the brain and spinal cord. Keep in mind that the brain develops throughout the entire pregnancy and is vulnerable to ongoing damage. The resulting physical changes and changes in brain functioning make FASD a brain-based physical disability. While we cannot see the physical changes to the structure, size or appearance of the brain we can see the permanent changes in behaviour. This wide assortment of behavioural signs and symptoms serves as evidence of prenatal alcohol exposure and is sometimes referred to as the neurobehavioural characteristics of FASD.
FASD is a Family and Community Issue
FASD is not just an individual experience it is also a family and community concern. FASD not only influences the child, youth or adult affected by exposure to alcohol in the womb but mom, dad, other family members, class mates, teachers, neighbours, coworkers and the community as a whole. Since FASD influences each one of us, increased awareness and understanding of FASD at a community level is critical. With knowledge, community members can make a positive difference to individuals and families living with FASD.
Families, whether birth, foster, adoptive or extended will have a unique experience. All families need the understanding of others. Most will also need additional services from systems of social support and community organizations. Families benefit when they receive both formal and informal support with feelings of loss, grief or disappointment. Siblings, grandparents and extended family members may need help to understand FASD and understand how they can support each other.
Alcohol Use During Pregnancy
Alcohol has a long history as part of human society. For hundreds of years people have wondered about different ways that alcohol can affect a fetus in the womb. There were times in history when alcohol was thought to be dangerous but it was not known for sure why. There were also times when alcohol was thought to be helpful. It was not until the early 1970s that we began to better understand the connection between prenatal alcohol exposure and disability. We now know of some of the harms of drinking alcohol during pregnancy and how serious this can be, but there are still many things to learn.
Many community members wonder why women use alcohol while pregnant. A common response from the public is anger or judgement. Some people assume that a woman who drinks does not care about her pregnancy or the developmental changes of the fetus. This is not true or helpful. Alcohol use during pregnancy, whether early on or in the later stages, does not indicate a diminished concern or care for her pregnancy. The reasons for alcohol use during pregnancy are complex and varied.
Think about the factors listed here:
-
Many women use alcohol to ease the pain of physical, emotional or sexual violence experienced in their lives.
-
Some women have an addiction to alcohol and need help to stop drinking or to reduce drinking.
-
Women with children find it more difficult to access treatment due to childcare concerns.
-
Some partners do not help women to have a healthy pregnancy and may even encourage drinking.
-
Women may drink alcohol very early in their pregnancy before they know they are pregnant. When they know of their pregnancy, they limit their drinking or do not use alcohol at all.
-
Women who themselves have FASD may struggle to have a safe and healthy pregnancy. They are at risk of having children exposed to alcohol while in the womb.
-
There are women who hear misleading or inaccurate messages about alcohol use. If women are not fully informed or do not fully understand the risks of prenatal alcohol exposure, they may have alcohol exposed pregnancies.
You can see there are a variety of factors leading to prenatal alcohol exposure. Because there is no known safe amount or safe time to drink, it is best not to drink alcohol during pregnancy. It is also important to limit, or even better, abstain from alcohol while breastfeeding. It is helpful for all of us to understand that no woman harms her baby on purpose. Yes, FASD can be prevented. To prevent FASD, all women need the support of families and communities to have healthy, safe and alcohol free pregnancies.
Primary Disabilities
Living with FASD is about more than a diagnosis. It is also about living with strengths and struggles. It is about living with a disability. All across Canada, infants, children, youth and adults live with FASD and experience a range of primary disabilities. Primary disabilities are those disabilities caused directly by prenatal alcohol exposure. No two individuals experience the primary cognitive, behavioural, physical or sensory disabilities in the same way.
Primary disabilities are those disabilities that are the direct result of prenatal alcohol exposure.
The common primary disabilities linked with FASD include:
-
Cognitive Disabilities (thinking or learning)
-
Behavioural Disabilities (actions)
-
Physical Disabilities (body and health)
-
Sensory Disabilities (information from senses)
Each individual with FASD is born with a unique set of primary disabilities and characteristics. However, there are some common disabilities and those disabilities are described below.
Cognitive Disabilities
Cognitive functioning refers to intellectual processes and mental tasks. We use many cognitive processes every day. For example, every day you likely take in, store, find and use information. You also learn from experiences and predict outcomes based on experiences, you pay attention to the world around you, make decisions and solve problems. Each day you will use many more cognitive processes but from these examples you can see how important cognitive abilities are to our successful functioning.
Here are some examples of what impaired cognitive functioning might look like in everyday life for a person with FASD:
-
Slower cognitive pace—needs extra time to process information
-
Slower auditory (hearing) processing—understanding verbal information takes longer, responses may seem out of context or off topic
-
Difficulty with prioritizing, organizing, reasoning, planning, initiating and following through, may start but not finish, set goals but not know how to achieve goals
-
Trouble with abstract thinking—problems with math, time, money, emotions, etc.
-
Problems generalizing—what is learned in one setting is not readily transferred to another
-
Difficulty with memory—forgetful, loses items, repeats the same mistake
-
Poor judgement—impaired decision making, inability to differentiate between safety and danger, trouble knowing what is important or not important, trouble with predicting outcomes
-
Trouble with problem solving, making choices or making decisions—cannot think of possibilities or an alternative other than what is happening right then
-
Confabulation and untruths—filling in the blanks and storytelling that might be perceived as lies, not understanding the difference between truth and fiction
-
Inconsistency–-varying learning abilities, personal changes from day to day
-
Communication problems—speech and language problems, can repeat rules but does not understand what the rule requires, inaccurate or not logical responses to questions
Behavioural Disabilities
Humans have many behaviours all controlled by brain functions. Much of our behaviour is linked to social and emotional development. Because our brains control our behaviours it makes sense that a damaged brain creates disordered behaviours. Some examples of behavioural disabilities experienced by children, youth or adults with FASD are:
-
Problems getting along with others
-
Impaired ability to read social cues—cannot detect subtle, or even obvious, social cues and thus have disordered responses
-
Impulsive actions and poor ability to delay gratification—lives in the moment and wants immediate results
-
Grandiose aspirations and expectations—impaired understanding of what is possible or realistic
-
Lack of inhibitions—may be overly friendly or too direct in approaching others
-
Poor understanding and use of personal boundaries and personal space
-
Struggles with regulating emotions—unpredictable mood swings, anger, explosiveness, violence possibly triggered by seemingly minor events
-
Blaming others and defiance—struggles to see link between own actions and what has happened
-
Impaired ability to recognize a range of emotions or articulate emotions so they may appear to be emotionless or have a flat affect
-
Poor ability to express empathy—differences in bonding and attachment
-
Perseveration—which is getting stuck on an issue, idea or place; extreme focus; rigid and inflexible behaviour patterns
-
Being easily influenced, overly trusting, naive and gullible
-
Dysmaturity (acting socially, emotionally and cognitively younger than one’s chronological age)
-
Vulnerable to peer pressure and influence—easily led by others
-
Sleep problems and fatigue—seems to sleep too much or not enough, lacking an internal clock, disordered sense of time
-
Being over active—inability to self-calm or regulate energy levels
-
Easily overwhelmed and may shut down entirely as a response
-
Change and transitions in activities or plans are hard—may seem confused or react badly to changes in routine
Physical Disabilities
From conception until death, each human physically develops and changes. Physical development includes growth of body size (height and weight) growth of body organs and body systems (sensory or skeletal) and changes in motor development. While many people with FASD have physical symptoms not all individuals with FASD have physical signs, symptoms or medical issues. Some physical symptoms are listed below.
-
Delayed motor development—slow to meet developmental milestones
-
Problems with fine and gross motor skills—especially noticeable as children reach school age and begin classroom activities with their peer
-
Poor hand eye coordination
-
Poor balance or coordination—appears clumsy or awkward
-
Lower height or weight
-
Distinct facial features
-
Hearing impairments and auditory processing problems
-
Poorer functioning or poorly developed body systems including skeletal, muscular, renal, circulatory, etc. this can lead to further physical health problems
Sensory Disabilities
The sensory system is an important body system. Sensory organs develop in the womb and continue to develop throughout childhood. The human sensory system allows us to take in information about where we are in the world and what is going on around us. Our brains receive information from each sense. This gives us the ability to taste, smell, touch, hear, see, know our body position (called proprioception) and perceive movement sensations (called vestibular input) (Better Endings, 2009). Sensory impairments in individuals with FASD are often noticed during infancy and continue throughout the lifespan.
Taking in and knowing the meaning of this range of sensory information is sensory processing. The senses take in enormous amounts of information. We function best when all the senses work together. This process is called sensory integration (Better Endings, 2009).
Sensory processing and sensory integration help with successful functioning, responding and making sense of the world. With the presence of a brain injury resulting from exposure to alcohol in the womb, individuals may experience a variety of sensory issues and sometimes are diagnosed with a sensory integration disorder. Disordered sensory processing and integration can create difficulties for individuals with FASD and can impair learning, physical functioning and behavioural development (Better Endings, 2009).
Signs and Symptoms of Sensory Disabilities
-
Poorly functioning sensory system—high or low pain tolerance, increased or decreased sensitivity to light, sound, texture, smell, movement or combined stimulation
-
Over reactive to stimuli—unable to filter out varying forms of sensory input, difficulty knowing which sensory messages are important/unimportant
-
Under reactive to stimuli—brain does not seem to focus on any one type of stimuli, shows little reaction to sensory input
-
Sleep problems—trouble falling asleep, staying asleep or trouble waking, staying awake
-
Sensory seeking behaviours-seeking out sensory information such as swinging, climbing, jumping or spinning
-
Sensory avoidant behaviours-avoiding sensory input, for example avoiding noisy crowds, bright lights or busy places
-
Sensory integration problems- impaired ability for the senses to work together resulting in disordered behaviour and learning
-
Sensory processing problems-the brain has impaired ability to organize and interpret sensory input
-
Unusually high activity level (slow to settle down) or low activity level (shuts down)
Secondary Challenges
Secondary challenges, sometimes referred to as adverse outcomes, are not caused directly by prenatal exposure to alcohol, but they develop throughout later childhood, adolescence and during adulthood. Children, youth and adults living with FASD live in a world that often does not fit them very well. Most people around them do not recognize that their behaviour and limitations are in fact linked to primary disabilities of FASD.
The poor fit between a person with FASD and her or his environment is not on purpose. It is the result of gaps in understanding and missing information. When a disability is not recognized, demands and expectations that cannot be met because of brain differences are placed on individuals with FASD. These individuals experience failure over and over. Repeated failure and continued high expectations in an environment that is confusing, overwhelming and frustrating contributes to secondary challenges.
Secondary issues are interconnected. They tend to stack up over and above the struggles linked with the primary disabilities. Families and professionals see several types of secondary challenges like the ones listed below:
-
Mental health problems
-
Disrupted school experience
-
Trouble with the law
-
Confinement for treatment or mental health
-
Addictions
-
Gambling
-
Inappropriate sexual behaviour
-
Social isolation
-
Withdrawal
-
Problems living independently
-
Homelessness
-
Victimization
-
Risk taking activities
-
Unplanned pregnancy
-
Problems with employment
Finding a Good Fit
Many families have identified that secondary challenges are actually more troubling and confusing than primary ones. Secondary issues often take the most time and energy and carry greater risk to the child, youth, adult and family. It is very important to recognize a poor fit and be prepared to help find a good fit. Everyone requires a good fit in her or his environment. Creating a good fit takes some work but can lessen secondary challenges and characteristics. A good fit for an individual with FASD must be based on strengths, abilities, interests but also must address struggles.
Identifying strengths is a great starting point. Knowing about struggles and disabilities is important but knowing about strengths will help create a good fit and make a positive difference. Look for chances to discover new talents as the individual ages and matures. Every person is unique and will have a particular set of gifts.
Some common strengths for people with FASD:
-
Highly verbal, friendly, cheerful and affectionate
-
Natural kindness with children and animals
-
Fair and cooperative nature
-
Caring, kind, concerned, sensitive, loyal, faithful
-
Creativity, especially in art and music
-
Manual and mechanical skills, good with repetitive activities such as cooking and construction
-
Determined, committed, persistent and helpful
-
Spontaneous, curious, and involved
-
Problem solve with support
Assessment & Diagnosis
Diagnosis within the spectrum of FASD is a medical process. Specially trained doctors and teams of professionals ask questions and gather information during the assessment process. The team will look for key features of FASD including problems with growth, certain facial characteristics, impairment to central nervous system (problems with learning, behavioural or sensory problems) and knowledge about maternal alcohol use. Following assessment, a decision may be made on a diagnosis. In some cases, an additional or co-occurring diagnosis may be made.
Early assessment is important as therapeutic interventions can begin at an earlier age and appropriate strategies can be used earlier in life. In many cases, diagnosis will not be given for children younger than six, however early assessment can provide good information and diagnosis can follow as the child grows and cognitively develops.
In 2015, changes were recommended to the diagnostic guidelines for FASD. The guidelines were changed to improve diagnostic criteria and capacity for FASD based on emergent evidence and current practice. The following describes the Canadian diagnostic terms and criteria within the span of FASD.
FASD with sentinel facial findings
(includes former diagnoses: FAS, pFAS)
-
Prenatal exposure to alcohol confirmation not required
-
Three facial features
-
Three domains of impairment
FASD without sentinel facial findings
(includes former diagnoses: ARND)
-
Prenatal exposure to alcohol confirmed
-
No facial features required
-
Three domains of impairment
At Risk for Neurodevelopmental disorder and FASD
(included as a designation, not a diagnosis)
-
Prenatal exposure to alcohol confirmed
-
OR all three facial features
-
Clinical concern about development
The 3 facial features refer to: thin upper lip, short palpebral fissures (the opening between eyelids) and smooth/flattened philtrum (the groove between the nose and lip).
The ‘domains of impairment’ refer to how an individual rates in the following areas:
motor skills, neuroanatomical/neurophysiology, cognition, language, academic achievement, memory, attention, executive functioning including impulse control, affect regulation (mental health), adaptive behaviour (social communication)
The former diagnoses that may still be encountered include Fetal Alcohol Syndrome (FAS), Partial Fetal Alcohol Syndrome (pFAS), Alcohol-Related Neurodevelopmental Disorder (ARND) and Alcohol-Related Birth Defect (ARBD).
Fetal Alcohol Syndrome (FAS): To be diagnosed with FAS other possible diagnoses must first be excluded. Diagnostic criteria must be met in the areas of growth deficiency, specific facial features, evidence of central nervous system impairment and confirmation of prenatal alcohol exposure. It is important to note that although rare, a diagnosis of FAS may sometimes be given without confirmed prenatal exposure to alcohol.
Partial Fetal Alcohol Syndrome (pFAS): Again, other possible diagnoses must first be excluded. This diagnosis relies on confirmed prenatal alcohol exposure, evidence of facial features typical of FASD and evidence of central nervous system impairments. In this case, the child would have very minimal or no growth deficiencies. With this diagnosis, it is important to note that while the physical indicators may be fewer, the impairment to the central nervous system and deficits in brain functioning may be similarly profound as in the case of a diagnosis of FAS.
Alcohol-Related Neurodevelopmental Disorder (ARND): This is another diagnosis within the spectrum. For an individual to be diagnosed with ARND, other diagnoses must be excluded, prenatal exposure to alcohol must be confirmed and there must be evidence of impairment to central nervous system functioning. An individual with ARND would not have any physical signs of disability.
Knowledge about assessment and diagnosis is still quite new. There are relatively few trained teams in Canada and Saskatchewan. This means that many individuals who might have been exposed to alcohol in the womb have not been diagnosed within the spectrum of FASD. The assessment and diagnostic process is long and can be complicated but it is important. The FAS Network of Saskatchewan continues to work with other agencies, professionals and families to increase services in assessment and diagnosis.
Where to Seek Assessment and Diagnosis in Saskatchewan
In Saskatchewan, diagnostic services are presently available in Regina, Saskatoon and Prince Albert. What follows is a brief overview of some of the services available at this time; not all services are necessarily presented in this overview. There may be a waiting period at each location and the wait time may vary.
Saskatoon:
Alvin Buckwold Child Development Program at the Kinsmen Children’s Centre offers assessment and diagnostic services for children and youth from birth to 18 years. You will need a medical referral from your family doctor. You can ask for a referral if you are noticing behavioural issues, learning problems or sensory concerns. Contact (306) 655-1070 to speak with an intake nurse or social worker.
Adults can receive a psychological assessment from Dr Gerald Block. Following that, clients can be referred to a medical assessment by their family doctor. For more information, call the Network at 1-866-673-3276.
Regina:
Regina Child & Youth Services accepts open referrals for individuals between the ages of 6 - 18. They provide comprehensive, multidisciplinary FASD assessment. All referrals can be made to the intake office by calling (306) 766 - 6700.
Prince Albert:
The Early Childhood Development Team, located in the Therapies Department at the Victoria Hospital, provides assessment services for children from birth to preschool age. You can contact the Early Childhood Development Team at (306)765-6126.
The Child and Youth Development Clinic provides assessment and diagnostic services for children starting in Kindergarten, through to young adults aged 24 years. You do not need a referral from a doctor. Contact Laurie Janzen, Clinic Coordinator at (306) 765-6068 with questions or for more information about the assessment and diagnostic process.
Families in Rural, Remote or Isolated Communities
Families in communities outside of Regina, Saskatoon and Prince Albert will need to travel to access assessment and diagnostic services. While travelling clinics do occasionally offer services to remote or isolated communities, these clinics are limited.
