LOOK BEYOND FASD
1. What is FASD?
a. Standardized Definition
Fetal Alcohol Spectrum Disorder
“Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term used to describe impacts on the brain and body of individuals prenatally exposed to alcohol.
FASD is a lifelong disability. Individuals with FASD will experience some degree of challenges in their daily living, and need support with motor skills, physical health, learning, memory, attention, communication, emotional regulation, and social skills to reach their full potential. Each person with FASD is unique and has areas of both strengths and challenges .”
FASD: A 3-MINUTE INTRODUCTION
A short introduction on what is FASD by The Asante Centre.
© FASD: A 3-Minute Introduction - The Asante Centre
B. WHY IS ALCOHOL DANGEROUS TO CONSUME DURING PREGNANCY?
Alcohol is a known teratogen. A teratogen is a substance that disturbs the development of an embryo or fetus by changing the DNA at any point during the 40 weeks of pregnancy.
When a pregnant person drinks alcohol, the alcohol goes into their bloodstream and is absorbed into the placenta. Since the growing fetus receives all its nutrients and oxygen through the placenta, this means alcohol also gets absorbed and affects the brain’s development.
During pregnancy, the brain grows from bottom to top. It starts as a tube (spine) and grows outwards and upwards. This means that certain regions of the brain will be more impacted than others depending on when alcohol is consumed during pregnancy.
The regions the furthest away are the most impacted. As the neurons develop, they have to travel the furthest distance away from the stem cells. This means these neurons have more chances of getting “stuck or lost” on their way to their final destination.
Misconception: A common belief is that prenatal alcohol exposure (PAE) during the later stages of pregnancy is less harmful. This is in fact false. The brain keeps growing and changing all throughout the pregnancy, up to the end.
There is no safe time or amount of alcohol to consume during pregnancy, and any amount of alcohol may harm the developing baby.
c. IMPACTS OF PRENATAL EXPOSURE TO ALCOHOL
FASD presents itself differently in every person.
When alcohol is consumed during pregnancy, it often results in a pattern of uneven development across a person’s physical, cognitive, social, and behavioural functioning.
2. FASD CHARACTERISTICS ACROSS THE LIFESPAN
FASD is often an invisible disability. The characteristics in each person will be different depending on the timing and amount of alcohol they were exposed to during pregnancy. Although there is no cure, with proper supports and education, characteristics of FASD can be managed.
It is important to note that FASD is often an invisible disability. This means that sometimes there are no visible signs of impairment. But just because there are no physical signs of FASD, that does not mean that a person does not need specialized support.
a. TYPICAL DIFFICULTIES
People with FASD commonly experience one or more of the following:
- Learning and memory difficulties
- Difficulty storing and retrieving information
- Speech and language challenges (receptive and expressive)
- Short attention span (distractibility), impulsive behaviour, easily overwhelmed
- Social difficulties (difficulties with understanding social rules and expectations)
- Ability to repeat instructions, but inability to put them into action
- Difficulties with abstract concepts – money, mathematics, time
- Sensory difficulties (hearing, vision, touch, smell)
- Developmental delays (growth deficiency, coordination and motor difficulties, organ defects, skeletal abnormalities)
b. FASD IN INFANCY, CHILDHOOD AND ADOLESCENCE
Potential effects of FASD
- Irritability
- Poor organ function
- Decreased sucking response
- Motor immaturity – slow mastery of walking, talking, imitating sounds
- Slower response to engagement
- Low levels of arousal
- Distorted sleep patterns
- Highly susceptible to illness
- Chronic constipation
- Developmental delays in Language, Motor, and Physical Growth
- Issues with behavioural regulation, activity level, response to over stimulation
- Sensitivities to light, sound and touch
- Short attention span
- Does not respond well to changes, prefers routine and structure
- Prone to temper tantrums and non-compliance.
- Social difficulties more evident
- Overly friendly
- Not understanding cues or limits
- Language challenges
- Issues with behavioural regulation
- Memory deficits
- Inability to transfer learning from one situation to another or to learn from experience.
- Difficulty shifting from concrete to more abstract concepts
- Learning Disabilities becoming evident
- Lack of focus, hyperactive, or signs of depression
- Social immaturity; difficulty making or keeping friends
- Lack of understanding of social cues, poor perspective taking
- Difficulty with unstructured time
- Mood swings and issues with behavioural regulation..
- Increasing behavioural and emotional regulation difficulties
- Onset of adverse outcomes, such as disrupted school experience, involvement with the law, and sexually inappropriate behaviours due to faulty logic, lack of basic types of critical thinking and judgement skills
- Issues with self-esteem and motivation
- Heightened risk of mental health and substance use issues
- Difficulties with reading comprehension and mathematics
- Difficulties with applying instructions even if they appear to understand and can repeat them.
c. FASD IN ADULTHOOD
- Uncontrolled repetition of particular response – ideas or activities may appear compulsive and or rigid
- Poor social skills
- Require individualized support to safely parent children
- Struggles with independent living
- Struggles with finding housing
- Struggle with getting employed or retaining employment
- Problems managing money
- Lack of reciprocal relationships
- Struggle with impulsivity, being unpredictable
- Alcohol and other substance misuse
- Legal problems.
d. STRENGTH-BASED APPROACH TO SUPPORTING PEOPLE WITH FASD
Common strengths identified in people with FASD include but are not limited to:
- Being caring towards others
- Friendly, outgoing, affectionate, and likeable
- Hard-working, determined, and persistent
- Chatty and good storytellers
- Helpful and generous
- Hands on, concrete learners
- Creative and artistic
- Energetic
- Good with elderly people, and animals
- Non-judgmental.
3. PROTECTIVE FACTORS FOR POSITIVE OUTCOMES
Protective factors are things that can be done at the individual, family, community, and societal levels to improve outcomes for people with FASD.
A celebration of Eeyou/Eenou Family Values
Our family values originate from our Eeyou/Eenou philosophy/Iiyiyiuiyihtuwin (Eeyou/Eenou way of life), traditional values and customs that come from the land, birds, fish and animals we harvested for food.
Our ancestors, grandmothers and grandfathers alike had a special relationship with all animals, land, water, and air.
Much like the animals they harvested, our ancestors roamed the pristine lands of Eeyou/Eenou Istchee with respect and gratitude for what the Creator had to offer.
Eeyou/Eenou family values and customs are the strength of our nation because they teach us to respect one another and share our food when times are tough.
Eeyou/Eenou family values guide you and steer you in the right direction in living the good way.
“Eeyou/Eenou family values guide you and steer you in the right direction in living the good way”.
As parents and caregivers practicing these values can help to create a safe, stable, and predictable home for someone with FASD. This will help to lessen some of the difficulties the person with FASD will face and create an environment in which they can develop coping strategies, build capacity, and fully benefit from your support throughout their lifetime.
- Early intervention-Your local clinic is the main entry to receiving disability services for someone with FASD (Community Worker, Special-Needs Educator, Allied Health and Maanuuhiikuu professionals, etc.).
- Diagnosis: A diagnosis is not required to begin helping a person with FASD. However, a diagnosis will open doors to specific supports and funding that otherwise would not be available
Disability Programs Specialized Services (DPSS) of the Cree Board of Health and Social Services of James Bay leverages their resources to support the Miyupimaatisiium Care Team (MCT) and the Extended Care Team (ECT) in the areas of neurodisability and complex disability profiles. This support is provided through knowledge sharing and a collaborative approach to complex disability case management, neurodisability program delivery, as well as respite planning and funding.
DPSS operates in a supportive role to these teams rather than directly interacting with clients themselves.
Sources:
1- Harding, K., Flannigan, K., and McFarlane, A. (2019). Policy Action Paper: Toward a Standard Definition of Fetal Alcohol Spectrum Disorder in Canada. CanFASD Research Network. https://canfasd.ca/wp-content/uploads/2019/08/Toward-a-Standard-Definition-of-FASD-Final.pdf
2- Over 1.5 million Canadians, or approximately 4% of the population, are estimated to have FASD. From the CanFASD Level 2 training. Katherine Flannigan, K.U., Kelly Harding, The Prevalence of Fetal Alcohol Spectrum Disorder. 2018.
3- Strengths Video: https://youtu.be/o0SC7vkrtp4
4- CanFasd level 1 training: https://youtu.be/d6Wl_Oxt_pE
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Supporting people with disabilities who experience significant and persistent limitations as a result.
