Fetal Alcohol Spectrum Disorder (FASD) is an important health issue in Canada. The term Fetal Alcohol Spectrum Disorder 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 a mother drinks while pregnant.
When a woman drinks alcohol while pregnant, her fetus is exposed directly to alcohol through her 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:
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.
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. We do not have national statistics on the rates of FASD in Canada although the Public Health Agency of Canada suggests that 9 in 1000 births are affected. Another way to understand this is that up to 300,000 people are living with FASD in our country (PHAC, 2010) (PHAC, 2005).
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.
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 an invisible disability. What is most problematic is that the invisibility 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.
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 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 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:
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.
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:
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 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:
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:
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.
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).
Secondary disabilities, sometimes referred to as secondary characteristics, 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 characteristics.
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 characteristics like the ones listed below:
Many families have identified that secondary characteristics 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 disabilities 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:
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)
|FASD without sentinel facial findings
(includes former diagnosis: ARND)
|At Risk for Neurodevelopmental disorder and FASD
(included as a designation, not a diagnosis)
The 3 facial features refer to: thin upper lip, short palpebral fissures (the opening between eye lids) 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 behavior (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 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 FASD Support Network of Saskatchewan continues to work with other agencies, professionals and families to increase services in assessment and diagnosis.
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.
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 worker. For questions or more information on the assessment and diagnostic process at Alvin Buckwold Child Development Program call Linda Charlton, Social Worker, at (306) 655-1085.
Travelling clinics have provided services in northern communities.
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.
A multidisciplinary team at Regina Child and Youth Services offers assessment and diagnostic services for children, youth and adults. You do not need a doctor’s referral for services. Contact the intake office at (306) 766-6700 with questions or for information about FASD assessment and diagnosis.
Traveling clinics have offered services to southern Saskatchewan communities.
The FASD Centre at Regina Community Clinic provides support, assessment, diagnosis and follow-up for persons aged six through adulthood. You can contact FASD Case Coordinator, Cheryl Charron, at (306) 543-7880 ext. 268 with questions or for information on the assessment and diagnostic process.
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 communities outside of Regina, Saskatoon and Prince Albert will need to travel to access assessment and diagnostic services. While traveling clinics do occasionally offer services to remote or isolated communities, these clinics are limited.