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 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
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
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
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)