Understanding FASD

The occurrence of FASD is not limited by class or ethnicity; it touches people from all walks of life.  Many factors, such as lack of access to diagnosticians and differing policies on reportable birth defects, lead to a lack of complete and accurate statistics on the prevalence of FASD; however, Health Canada reports that FASD is more prevalent than all other major birth defects combined.  The most often used, very conservative, estimate of 1:100 indicates that an average of at least one child is born with FASD every week on Vancouver Island alone.  Further, recent studies in Italy indicate that, an average of 2.4 – 4.7 babies out of every 100 are born with FASD.   Research published in 2014 found the same 2.4% – 4.8% of 6 and 7 year old children in a Midwestern U.S. community have FASD. ¹

¹May et al, Pediatrics, October 2014

Diagnostic guidelines for FASD have recently changed. The DSM –V published in 2013 included FASD for the first time. Canadian guidelines for diagnosis were updated in 2015. Key Points of the 2015 guidelines as described in the Canadian Medical Association Journal are:

• Fetal alcohol spectrum disorder (FASD) is a diagnostic term describing the constellation of effects that result from prenatal alcohol exposure.

• Making a diagnosis of FASD requires a multidisciplinary team and involves a complex physical and neurodevelopmental assessment.

• Diagnosis of FASD is critical to improve outcomes for affected individuals and families, and to inform pre-pregnancy counselling to prevent future cases. ²

²CMAJ, February 16, 2016, 188(3)

FASD includes the diagnoses of Fetal Alcohol Syndrome (FAS), Partial Fetal Alcohol Syndrome (pFAS), Alcohol Related Birth Defects (ARBD), Alcohol Related Neurodevelopmental Disorders (ARND), Prenatal Alcohol Exposure (PAE) and other physical behavioural and learning disabilities.

FASD can involve malformation of various organs, the most significant of which is permanent organic brain damage. The effect of this brain damage manifests in a range of difficulties with memory, cognition, executive functioning, and adaptive functioning.  Specifically, persons with FASD may have difficulty organising, planning, understanding or recalling a sequence of events, connecting cause and effect, and/ or regulating their own behaviours and emotions.  Typical brain based, primary characteristics of FASD include:

• Inconsistent memory and recall
• Inability to filter out environmental or emotional distractions and sensory stimuli
• Slower, inconsistent cognitive and auditory processing
• Decreased mental stamina
• Difficulty interpreting, and applying abstract concepts (i.e. managing money & time)
• Inability to control impulses
• Inability to predict outcomes (as a result of their own or others’ actions)
• Difficulty changing modalities (i.e. shifting from one context to another)
• Rigidity (unable to move on prior to completion)
• Inability to see another person’s perspective
• Inability to recognise indirect social cues

Another common characteristic of individuals diagnosed with FASD is dysmaturity. Dysmaturity is not simply immaturity; rather it refers to widely varying levels of maturity in different modalities, such as expressive language and language comprehension; social and self care skills; and awareness and regulation of emotions.  The IQ of persons with FASD is most often within the normal range, yet they do not have the ability to meet many of society’s age based social and academic expectations.  Since FASD is usually not outwardly visible, the effects of dysmaturity on persons with FASD can be puzzling to themselves and to those around them.

The Secondary Characteristics of FASD are not directly caused by the physical brain injury.  Rather, they are the result of a constant misunderstanding of the primary disabilities.  Tragically, these misunderstandings all too often result in the marginalisation of persons with FASD and of their families.

Major social issues associated with FASD include:

• • • • Mental Health Disorders
      • Homelessness
      • Alcohol and Drug Addictions
      • Disrupted School Experience
      • Trouble with the Law, Incarceration
      • Inappropriate Sexual Behaviour
      • Problems with Employment
      • Dependent Living
      • Early Death

These pose considerable (and largely unnecessary) economic burden to society.

Widespread community understanding and personal support can lessen the severity of and, in some cases, prevent the secondary characteristics of FASD.