Video: FASD 101: Diagnosis and Support of FASD

This video summarizes research and systems of care for FASD prevention, common terms associated with FASD and the diagnostic process.

About this video

Production Date: November 2011
Length: 1 hour, 58 minutes
Presenter: Dr. Gail Andrew
Download slide notes for this video (PDF, 31 pages)

Dr. Gail Andrew received her medical and pediatric training at McGill University. As a developmental pediatrician, she has worked in childhood disability. Currently, she is a clinical professor of pediatrics at the University of Alberta and the medical director of the Glenrose Rehabilitation Hospital FASD Clinical Services in Edmonton. Her role includes diagnosis, training, education and research on FASD.

Dr. Andrew has done consultations for the Alberta Cross Ministries Committee on FASD and is on the Board of Directors of the Canada Northwest FASD Research Network. Dr. Andrew was the scientific chair of the 2009 Alberta Consensus Conference on FASD Across the Lifespan. The conference produced the book: ‘Fetal Alcohol Spectrum Disorder: Management and Policy Perspectives’.

Outcomes

This video will help you understand:

  • the scope of the FASD challenge in 2011
  • what research has informed our current practice
  • the multidisciplinary team’s diagnostic process
  • how FASD can present across the lifespan
  • the need for interventions and support systems, current practices and research
  • how FASD fits in the framework of strengthening lifelong health

Content

  1. What is FASD? (3:40)
  2. Scope of the challenge in 2011 (12:40)
  3. System of care for FASD prevention (24:20)
  4. The teratogenic effects of alcohol (37:19)
  5. Current research on neurophysiology (53:48)
  6. Update on diagnosis (1:08:00)
  7. FASD across the lifespan (1:28:00)

What is FASD?

Fetal Alcohol Spectrum Disorder (FASD) refers to the range of physical and developmental symptoms that may affect children born to mothers who consume alcohol in pregnancy.

PAE – Prenatal Alcohol Exposure is a risk factor and not a diagnosis.

FAS – Fetal Alcohol Syndrome: Full syndrome; growth deficiency, classical dysmorphic facial features, significant dysfunction

PFAS – Partial Fetal Alcohol Syndrome: Does not portray all the physical features but still has disability

ARND – Alcohol Related Neurodevelopmental Disorder: Significant brain dysfunction but no physical defects

ARBD – Alcohol Related Birth Defect: Prenatal alcohol ingestion can affect the development of the fetus’ heart, kidney, eye, and auditory system as well as brain function.

  • FASD is a lifelong disability with hardships that are more evident as societal expectations increase over time
  • diagnosis, intervention and prevention need to be linked
  • diagnosis for 2: working with both mother and child
  • break the multigenerational cycle by putting in supports from the point of diagnosis

Scope of the FASD challenge in 2011

  • in Canada, 300,000 individuals are living with FASD
  • an estimated 23,000 Albertans are living with FASD
  • underestimated due to a lack of diagnostic capacity and screening tools
  • in Canada the estimated annual cost for FASD is $6.2 billion
  • lifetime cost per person with FASD is $1.8 million
  • there’s a prevalence of FASD in foster care in Manitoba
  • 11% of children in care have FASD with 6% on waitlist for diagnosis
  • FASD care costs an additional $15,000 more per year than others in care
  • the largest cost was medications (5 times the general population)
  • prevalence of FASD in the justice system is unknown because we don’t have a high enough diagnostic capacity

System of care for FASD prevention

Who is at risk for having an FASD affected child?

  • all women of child-bearing age across all social strata
  • women most at risk have had adverse life experiences
  • about half of pregnancies are unplanned

Who is responsible for prevention of FASD?

  • medical and education professionals play important but difficult role
  • public awareness does not equal prevention
  • prevention programs need to be women centered

The teratogenic effects of alcohol

  • alcohol is a teratogen and causes brain damage
  • alcohol crosses the placenta, directly effecting fetal cells
  • the brain is vulnerable to alcohol throughout pregnancy and in early months of postnatal life

The spectrum of damage depends on:

  • amount and pattern of alcohol use
  • binge impact
  • timing in gestation
  • maternal genetics
  • changes in genes across generations
  • nutrition
  • other teratogens
  • stress
  • fetal factors
  • impact of postnatal environment

Teratogenic effects of alcohol in animal experiments

  • direct effect on neuron maturation, migration and organization
  • different weaknesses in different mouse strains
  • alcohol leads to reactive oxygen species causing tissue damage and glutathione depletion in neuron mitochondria

Teratogenic effects of alcohol in humans

  • increased basal cortisol levels in PAE infants
  • lack of normal cortisol response to stress
  • serotonin pathway altered in neonates with PAE; they have a blunting of pain and stress response
  • implications of maternal diet: zinc, choline, poor pregnancy weight gain

Current research on neurophysiology

Saccadic eye movements: Rapid eye movements that bring new visual targets onto the retina, either voluntary or automatic in response to sensory stimuli.

  • control by frontal cortex, basal ganglia and brainstem centers
  • FASD children have longer reaction times, excessive direction errors and no express saccades
  • reflects frontal lobe disruption of inhibitory mechanisms

Alcohol can damage every part of the brain:

  • cerebral cortex
  • cerebral white matter
  • deep cerebral nuclei
  • corpus callosum

Imaging studies

  • abnormality may be detectible by brain area size or brain activity patterns
  • FASD brains smaller by 8%
  • structural MRI and volumetric studies show reduced corpus callosum, cerebellum, caudate, as well as reduced deep grey matter in hippocampus, amygdala, thalamus, caudate, putamen, golbus pallidus
  • smaller frontal lobe with severity of facial dysmorphology
  • brain scans show less activation in prefrontal area with increasing complexity of task
  • brain scans shows differences in white matter pathways

Implications of brain damage from PAE:

  • brain scans showed that 7 out of 10 white matter tracts were abnormal correlation with reading vocabulary scores, math ability and prenatal alcohol exposure

Update on diagnosis

  • further validation and research is being done for a neurobehavioral screening tool
  • meconium analysis is not conclusive and has ethical issues
  • the ‘Medicine Wheel’ is a holistic approach covering the spiritual, emotional, intellectual, and physical aspects of life, according to Aboriginal tradition
  • current best screen is confirmed PAE and a child who is struggling
  • need to expand capacity for diagnosis after positive screening

Complexity in FASD diagnosis:

  • need confirmation of alcohol exposure in that pregnancy
  • alcohol exposure identifies risk but is not diagnostic
  • need evidence of organic brain damage by multidisciplinary team assessment
  • consider all other pre and postnatal factors; differential diagnoses
  • adverse environments can compound the already alcohol-damaged brain
  • impact of multiple home environments within family and foster care system
  • lack of early awareness of the PAE and access to supports can be detrimental
  • need for longitudinal follow up of children at risk
  • increasing difficulties appear over time
  • basic tests of IQ do not define FASD

Current research in FASD identifies deficits in:

  • memory
  • motor planning
  • attention
  • higher level communication
  • executive functions such as
    • inhibition
    • shifting
    • flexible thinking
    • sequencing
    • judgment

Primary disabilities in FASD

  • learning difficulties
  • neurobehavioral dysregulation
  • mental health
  • executive functioning deficits
  • can be misdiagnosed as only
    • attention deficit hyperactivity disorder (ADHD)
    • oppositional defiant disorder (ODD)
    • conduct disorder (CD)
    • post-traumatic stress disorder (PTSD)
    • depression
    • anxiety
    • attachment disorder

Secondary disabilities in FASD

There is new evidence that some so-called ‘secondary disabilities’ are actually a direct result of primary brain damage from PAE and epigenetic factors.

Diagnostic process

  • confirmation of the alcohol exposure
  • abnormal growth and facial features
  • intellectual: often scattered, not representing level of dysfunction
  • academic achievement: math difficulties, comprehension
  • attention: difficulty sustaining attention, shifting attention, impulsivity, common comorbidity
  • sensory-motor: motor planning, visual spatial, soft and hard neurological signs, sensory reactivity
  • communication difficulties: language formulation difficulties, disordered pattern, impaired narratives, poor perspective taking
  • memory problems: encoding, retrieval, visual and verbal memory, working memory
  • executive function impairments: inhibition, , judgment, sequencing, organizing, problem solving, mental flexibility, abstract reasoning
  • adaptive function challenges: day-to-day living ability, self-care, safety, victimization risk, employability
  • mental status irregularities: behavioral and emotional regulation, attachment, sleep pattern

Diagnosis needs to lead to a strengths-and-deficits-based approach. Supports need to address education, medical and mental health, community participation, legal, training for caregivers and transition planning into adulthood with this life-long disability. There also needs to be collaboration with the FASD-trained community.

FASD across the lifespan

Considerations need to be taken at all stages of a person’s life if they have FASD.

Newborn and infancy

  • optimal time to reach out to birth mother
  • caregiver training and counselling
  • developmental monitoring

Toddlerhood and preschool

  • quality of movement and play, preventing disorganization
  • looking for sleep disorders
  • preventing PTSD
  • developing basic language and fine motor skills
  • optimizing the sensory environment, structured play opportunities, stimulating language
  • supervision for safety, sleep and diet issues

Ages 5 to 6 years

  • social difficulties become more evident
  • children may not listen or not understand
  • behavioral regulation difficulties may develop with an “ADHD pattern”
  • transition the child to a group learning setting
  • consider medications for targeted behaviors

Ages 8 to 10

  • difficulties in executive functions, social communication skills, self-regulation and adaptive function
  • problems organizing unstructured time
  • impulsive, poor judgment, cannot generalize from one situation to another
  • poor emotion regulation
  • need individual educational strategies

Adolescents

  • increasing difficulties with behavioral and emotional regulation
  • not keeping up or fitting in academically, socially, in daily living
  • may lack personal support system
  • present with mental health ‘secondary’ disabilities such as depression, anxiety, acting out
  • may resort to substance use
  • may need vocational or independent living training

Adults

  • need for personal support system still present
  • symptoms may not be visible, but may have mental health issues, trouble with the law, difficulty holding employment or living independently, substance abuse, or partner violence

Interventions in FASD

  • environmental strategies (support, supervision and safety) should be in place before medications
  • ADHD management in FASD includes the use of long acting forms or higher doses because of frontal lobe damage.
  • cognitive behavioral therapy does not typically work to manage anxiety and depression in this population.
  • basic sleep hygiene is required: routines, sensory environment and medication.
  • to manage aggression, ODD or CD, consider cognition, language disorder, sensory reactivity and EF deficits.
  • when considering risperadone, consider the benefit and side effect ratio

FASD system of care

FASD fits with the framework of policies and programs designed to strengthen lifelong health. It’s a cycle of preconception, prenatal, early childhood, middle childhood, adolescence and adulthood.

Strategies and policies are needed at all points in the cycle, and these strategies need to be evidenced based. Caregiver and community capacities must be considered at all points, as well as an emphasis on sustainability.

Created:
Modified: 2015-09-09
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