FASD

Question 1

what is FASD?

Answer 1

• fetal alcohol spectrum disorder
• lifelong disability that affects the brain and body of ppl exposed to alcohol in the womb
• everyone has strengths and challenges and need special supports to help them succeed in daily lives

Question 2

how common is FASD?

Answer 2

• most common cause of cognitive impairment
• estimated global prevalence among kids and youth - 7.7/1000 (range 4.9-11.7)
• prevalence varies across populations
• schools - 2.3-6.3%
• prison - >10%
• child inpt psych - 23%
• children in care - 16.9-50%

*high health, societal and economic costs

Question 3

prevalence of alcohol use in pregnancy

Answer 3

Canada and US
- 10% of pregnant women in general population in canada and 15% in US

MB
- alcohol use (not in pregnancy) most prevalent ages 18-19 at 90.7%
- 38.8% drink 5 drinks or more
- 42% prevalence in grade 12
- 2009, 30% of 15-17 year olds reported intercourse and 68% of 18-19 year olds
- 26% 15-19 years old didn’t always use contraception

Question 4

how is a drink defined?

Answer 4

• standard drink is 17mL of alcohol
• age, body wt, meals and other exposures and overall health impact response to alcohol
• 532 mL of beer (5%) = 1.5 drinks
• 1 bottle of light beer (3.7%) = 0.7 drinks
• 1 can extra strength beer (8%) = 1.7 drinks
• 750mL wine (12%) = 5 drinks
• 266 mL wine (14%) = 2 drinks
• 59mL shot (40%) = 1.3 drinks

Question 5

what is a binge?

Answer 5

• heavy drinking 5 or more drinks (4 for women) per occasion, at least once a month in past year
• 5 glasses of wine (4.5oz), 5 beers (12oz), 5 shots (1.25oz)

Question 6

prenatal alcohol

Answer 6

• NO SAFE AMOUNT OF ALCOHOL EXPOSURE DURING PREGNANCY: women should
  be advised to abstain from alcohol while pregnant.
• A variety of maternal and fetal factors can mediate the impact of alcohol on brain
  development:
  – maternal age and weight
  – rate and pattern of alcohol consumption
  – levels of drinking prior to pregnancy
  – nutrition status
  – (toxic) stress

Question 7

Prenatal Alcohol Exposure – Canadian Guidelines

Answer 7

• The threshold of alcohol exposure known to be associated with adverse
  neurobehavioural effects:
  – 7 or more standard drinks per week, or any episode of drinking 4 or more drinks
  on the same occasion
  – Because the effect sizes seen with a single binge episode are present but
  relatively small, a threshold of 2 binge episodes is recommended as a minimum
  for diagnosis.

Question 8

Is FASD 100% preventable?

Answer 8

• In theory, yes.
• In practice, more challenging:
  – 50-75% of pregnancies are not planned.
  – Normative social drinking can easily surpass “binge” = 4 drinks on 1
  occasion
  – Several weeks of pregnancy (or longer) may have passed prior to a woman
  recognizing she is pregnant
  – Alcohol use is way of coping – remember… trauma/poverty are, in theory,
  preventable too

Question 9

why might women drink during pregnancy?

Answer 9

• They don’t know they are pregnant
• Lack of understanding what effect alcohol may have on an unborn child
• Peer pressure
• Addictions
• Intimate partner violence/pressure
• Trauma- current, historical, intergenerational

Question 10

how does alcohol reach the fetus?

Answer 10

• Alcohol enters the fetal blood supply through the placenta
• The fetus can process alcohol less rapidly than the mother
• Higher concentrations of alcohol remain in the fetus longer than in the
  mother (up to 24 hours)

Question 11

teratogenic pathways to the fetal CNS

Answer 11

• impaired cell acquisition / dysregulated
• altered regulation of gene expression
• disrupted cell-cell interactions
• cellular migration
• interference with growth factor signalling
• cell damage / cell death
• disrupted cellular energetics

Question 12

areas of brain that can be damaged in utero by maternal alcohol

Answer 12

• cerebrum - learning, goal oriented behaviour
• corpus callosum - passes info right to left
• hippocampus - memory, learning, emotion
• basal ganglia - spatial memory, behaviours like perseveration, inability to shift, work toward goals, predict outcomes, time perception
• cerebellum - coordination and movement

Question 13

FASD symptoms - infancy

Answer 13

• Excessive arousal
• Sleep problems
• Short attention
• Developmental delay
• Motor abnormalities- delay, abnormal
  quality
• Abnormalities in tone, reflexes
• Sensory processing differences
• “Difficultness”

Question 14

FASD symptoms - preschool

Answer 14

• Hyperactivity
• Attention problems
• Language delay
• Motor incoordination
• Sensory processing differences
• Aggression
• Abnormal memory
• Delayed play skills

Question 15

FASD symptoms - school age

Answer 15

• Attention deficits, impulsivity,
  hyperactivity
• Memory problems (home, school)
• Behavior problems
  – easily over-stimulated
  – problems with transitions
  – falsehoods
• Problems with friendships - difficulties
  with social judgment
• Learning disorders

Question 16

FASD symptoms - adolescence

Answer 16

• Working memory deficits
• Severe language impairment
• Sensory processing differences
• Poor judgment
• Learning disorders, weak academic
  achievement/academic failure
• Unstable social situations
• Psychiatric co-morbidity
• External supports needed for success

Question 17

barriers to assessment - parents

Answer 17

• Fear of being judged
• Stigma
• Embarrassment
• Denial/minimization
• Fear of child being placed in foster care
• Concern for child being labeled
• Concern that professionals will not see child as having potential
• Concern for family functioning

Question 18

barriers for professionals

Answer 18

• Fear of being perceived as judgmental
• Lack of awareness or belief that prenatal alcohol exposure is harmful;
  own values
• Concern over reaction of birth mother to being questioned about her
  alcohol use
• Not knowing how to ask questions regarding alcohol use in pregnancy
• Not knowing how to explain to a parent why an assessment would be
  helpful
• “Do no harm”… what if child or mother is stigmatized
• Fear child will be labeled

Question 19

criteria for assessment

Answer 19

1. 2. Identified developmental and behavioral concerns
      Reliable knowledge of prenatal alcohol exposure (at least two binges 4
      or more drinks or 7 drinks/week)
2. Guardian’s consent for assessment
   Key considerations
   * Alcohol exposure is a risk factor but not a guarantee
   * Not all children exposed to prenatal alcohol require an FASD assessment

Question 20

what’s needed for FASD assessment

Answer 20

• Confirmation of Alcohol Exposure
• Complete physical exam
  – Dysmorphology
  – Neurologic exam
  – Screen for other congenital differences
• Evidence of impairment in at least 3 brain domain areas is needed – most individuals
  have over 5-6+ domains clinically affected
  – Ideally a comprehensive assessment is needed in each category to determine the nature of the
  impairment

Question 21

gathering prenatal alcohol exposure info - talking to mom

Answer 21

Talking with the birth mother:
* Engage parent in discussion about concerns- also note child’s successes
* Review with parent possible contributors to children’s challenges (i.e. genetic,
environment, pregnancy factors)
* Non-judgmental/support approach – provide perspective to mother on why some women
use alcohol / relate to larger societal issues
* Assess mother’s reaction to discussion and provide support as needed
* Respect mother’s decision to NOT agree to a discussion or to not disclose alcohol use

Question 22

gathering prenatal alcohol exposure info - hospital/medical records

Answer 22

• Can be a source of information about prenatal alcohol exposure
• Needs to establish that alcohol was at least two binges (i.e. drank once prior to knowledge
  of pregnancy would not meet criteria)
• “Yes” ticked off on a maternal data base without other supporting information would not meet
  criteria
• Use of word “substance use” rather than alcohol use in records also has resulted in referrals
  screened out as the mother may have been using drugs not alcohol

Question 23

gathering prenatal alcohol exposure info - CFS records

Answer 23

CFS Records
* May have information describing prenatal alcohol information
documented by previous workers
* Assessment of the reliability of case records:
* How was the information obtained?
* Who is the source of the information?
* Are the details clear enough to link the information to the child being referred for the
assessment?

Question 24

MB FASD network team

Answer 24

Medical Director
Manager
Clinic Coordinator
Developmental Pediatricians
Geneticist
Occupational Therapists
Speech-Language Pathologist
Psychologist
Psychometrist
Social Workers
Regional FASD Coordinators
Follow-up Clinicians
Research Assistants

Question 25

10 brain domains

Answer 25

- adaptive, behaviour, social skills, social communication - academic achievement - attention - affect regulation - motor skills - general cognition IQ - memory - language - brain structure - executive functioning

Question 26

diagnostic criteria

Answer 26

* Confirmed significant prenatal alcohol exposure * “Severe” impairment in at least 3 different brain domains * Impairments are felt to be reasonably attributable to the prenatal alcohol exposure

Question 27

sentinel facial features

Answer 27

must have all 3: - short palpebral fissures <3rd percentile - thin upper lip - flat philtrum

Question 28

other facial features

Answer 28

May have, non-specific * Mid face hypoplasia * Micrognathia * Ear abnormalities * High arched palate * Epicanthic folds * Limb abnormalities * Abnormal palmar creases * Short up-turned nose

Question 29

microcephaly

Answer 29

* Microcephaly – head circumference below 2SD * Guidelines suggest that infants and young children with microcephaly + all 3 facial features without ND impairment may receive diagnosis * BUT: older child/adolescent/adult who has microcephaly + all 3 facial features SHOULD NOT – rare situation

Question 30

multifactorial approach

Answer 30

* Review of medical history, family history, and social situation * Review of multidisciplinary assessment information * Recognize the multiple factors impacting neurodevelopment and behaviour – Other prenatal exposures/complications: * Other substances * Maternal malnutrition * Toxic stress * Pregnancy complications – Postnatal complications: * Neglect, abuse * Foster care, attachment disruption * Discontinuity in caregiving, education, medical care

Question 31

FASD terminology

Answer 31

* Previously categorized based on presence of physical findings, including growth and specific facial features – Fetal Alcohol Syndrome – partial Fetal Alcohol Syndrome – Alcohol-related neurodevelopmental disorder – Fetal Alcohol Effects * Now everyone that meets criteria receives the same diagnosis of Fetal Alcohol Spectrum Disorder (with or without sentinel facial features)

Question 32

other terminology

Answer 32

* Individuals with FASD may have other neurodevelopmental diagnoses – Intellectual Developmental Disorder – Attention Deficit Hyperactivity Disorder – Specific Learning Disorder – Autism Spectrum Disorder * These are features of their FASD rather than separate, additional diagnoses

Question 33

multifactorial comorbidities

Answer 33

* Anxiety * Depression * Posttraumatic Stress Disorder * Oppositional Defiant Disorder * Sleep disorders

Question 34

benefits of assessment / dx

Answer 34

* Validation * Addressing current concerns * Building awareness * Identifying strengths * Directing intervention * Building circles of support * Enabling self-advocacy * Connecting with resources

Question 35

follow up improves outcomes

Answer 35

* FASD education for individual, caregivers, school * Review of assessment information and recommendations * Connection to resources – Financial supports – Advocacy with CFS, school, Jordan’s Principle – Community resources and supports * Referrals for ongoing services or to address specific needs – Psychiatry – Therapy – Adult services * Medication management as indicated

Question 36

factors associated with improved outcomes

Answer 36

* Stable home: >72% of child’s life, >2.8 years in each placement * Good quality home environment * Basic needs met for at least 13% of life * Early diagnosis * No experience of personal/family violence * Recognized disabilities

Question 37

recap

Answer 37

* There is NO known safe level of alcohol consumption during pregnancy. * Preventing alcohol-exposed pregnancies can result in significant cost savings and societal benefits through prevented cases of FASD and reduced use of the health and social services. * Effectively taking a reliable and accurate maternal alcohol history is the best screening tool for FASD. * Early diagnosis, through rigorous and thoughtful multidisciplinary assessment, can improve outcomes.

Question 38

motor skills

Answer 38

* Impairment present when a composite score below the clinical cut-off or on multiple subtest scores is obtained on assessment of FM, GM, graphomotor, or VMI * May also consider neurological findings along with motor skills: tone, reflexes, balance, coordination, strength

Question 39

neuroanatomy / neurophysiolog

Answer 39

* Microcephaly * Seizure disorder not due to known postnatal influences * Abnormal imaging known to be associated with PAE and other etiologies have been excluded

Question 40

cognition

Answer 40

* Intelligence below clinical cutoff * A major subdomain score (verbal, nonverbal, or fluid reasoning) below clinical cutoff * Large discrepancy among major subdomain scores

Question 41

language

Answer 41

* Score below cut-off in core language, receptive language, expressive language * Multiple scores below the clinical cut off are seen on subtests assessing higher level language skills (eg. narrative language, complex comprehension) * Large discrepancy between receptive and expressive composite

Question 42

academic achievement

Answer 42

* Below clinical cutoff on standarized measures of reading, math, and/or written language * Large discrepancy between cognition and academics * Must consider exposure to academics

Question 43

memory

Answer 43

* Score below clinical cut-off on composite measure of overall memory, verbal memory, or visual memory * Large discrepancy between verbal and non-verbal memory * Working memory deficit should be considered under executive function

Question 44

attention

Answer 44

* Defined as sustained or selective attention and resistance to distraction * Consider when multiple subtest scores below cut-off are obtained on CP tests or other measures * “converging evidence of impairment from multiple sources” * Inhibition, impulse control or hyperactivity should be considered under EF

Question 45

Executive Function, including Hyperactivity and Impulse Control

Answer 45

* Defined as impairments in working memory, inhibition/impulse control, hyperactivity, planning and problem solving or shifting and cognitive flexibility * Consider when multiple subtest scores below cut-off are obtained on EF tests * “converging evidence of impairment from multiple sources”

Question 46

Affect regulation

Answer 46

* Reflects DSM-5 diagnostic criteria for diagnoses of depression and anxiety made by qualified professional * Severity and age needs to be considered by diagnostic team * Should be longstanding problem of dysregulation rather than a short-term response to unfavourable life events or conditions

Question 47

Adaptive behaviour, social skills, or social communication

Answer 47

* Score below cut-off on the global composite score or subdomain score from a measure of adaptive behaviour, social language, social communication skills, or pragmatic language skills – Independent living: chronic inability to manage money, maintain an household, keep a job, personal hygiene, coping, caring for children – Social competence: financial victimization, criminal behaviour due to social gullibility, inability to participate in group treatment or placement * For children and most adolescents, standardized indirect (caregiver) ratings should be used * For adults and some adolescents, may need to consider other methods of interview and use of historical records * Observations and ratings should be across environments where appropriate