1. Working with Children with Fetal Alcohol Spectrum Disorders
Allison D. Brooks, Ph.D.
Licensed Psychologist
Washington State
FAS Diagnostic & Prevention Network
FAS DPN

2. WA State FAS DPN
Washington State FAS Diagnostic & Prevention Network (FAS DPN).
The FAS DPN is a network of 5 interdisciplinary FASD Diagnostic Clinics in Washington State.
All use the FASD 4-Digit Diagnostic Code.
Each interdisciplinary team includes a physician, psychologist, speech-language pathologist, occupational therapist and family advocate.
Established in 1992.
Mission: Primary and secondary prevention of FASD through
Screening Surveillance
Diagnosis Training
Prevention Research

3. Recognizing FAS: Diagnosis
Alcohol is a teratogen, a substance that causes birth defects. It can impact multiple systems:
Growth
Face
Brain
Heart, kidneys, hands, etc.
The presence of specific features in growth, face, and brain is required for diagnosis.
Exposure to alcohol is also part of the diagnostic criteria
MINU

4. Fetal Alcohol Syndrome
What is FAS?
Growth deficiency (ht or wt below the 10th percentile)
CNS damage (evidence of structural, neurological or functional impairment)
Unique cluster of minor facial anomalies (small eyes, smooth philtrum, thin upper lip)
Prenatal alcohol exposure
Prevalence: 1 to 3 per 1,000 live births (equivalent to Down Syndrome). Certain populations (such as children in foster care) in US and Canada have rates closer to 1 in 100. For each child with FAS, there are at least 3-4 times as many children with other FASDs.
Leading known cause of preventable intellectual disability*/ developmental disabilities.
Entirely preventable.
*formerly known as MR or mental retardation.

5. What are Fetal Alcohol Spectrum Disorders (FASDs)?
FASD is an umbrella term that refers to the full spectrum of outcomes observed among individuals with prenatal alcohol exposure.
FASD is NOT a diagnostic term. An individual would not receive a diagnosis labeled FASD. The term is too broad to serve as a meaningful diagnostic category.
4-Digit Code diagnoses that fall under the umbrella of FASD include FAS, partial FAS, Static Encephalopathy / alcohol exposed, and Neurobehavioral Disorder / alcohol exposed. FAE is no longer used as a diagnostic label.

6. The Three Diagnostic Facial Features of FAS
Short PFL <= -2 SD
2) Smooth Philtrum Rank 4 or 5
3) Thin Upper Lip Rank 4 or 5
Palpebral fissure length (PFL) =
endoncanthion to exocanthion

7. FAS Facial Features

8. The Brain of FAS?
Slide courtesy of Sterling Clarren

9. The teratogenic impact of alcohol on the developing brain
CNS and brain develop throughout gestation
No “safe” time (early or late)
Outcomes are variable because (in part)
Different structures and connections develop at different times
Neuronal migration is affected by alcohol

10. The teratogenic impact of alcohol on the brain
How alcohol impacts the brain depends on:
Timing of exposure
Amount of alcohol
Maternal factors (alcohol use history, age)
Fetal susceptibility
Genetic factors
Environmental Factors
Individual variability in the brain that was to exist prior to alcohol’s introduction

11. The face and brain relationship in FASDs
Individuals can experience severe damage to the neurological system as a result of exposure to alcohol, but not have the facial features.
It is also possible (though rare) to have the facial features of FAS as a result of alcohol exposure without significant neuropsychological consequences. (*Gestational days 19-21)
As a group, severity of impairment in brain function increases as the facial features severity increases.

12. FASDs are neurodevelopmental disorders
The most significant impact of prenatal exposure to alcohol is on the brain.
***Although they exist at birth, It is often difficult to identify or document brain-based problems in functioning in children with FASDs until they are in a later (e.g., middle childhood) stage of development.

13. Alcohol is not the only explanation
Other prenatal risk factors
Prenatal care
Exposure to other substances
Exposure to other teratogens
Genetic contributions
Postnatal risk factors
Medical history
Social history

14. Postnatal Risk Factors Impacting Outcomes in Children with FASDs
# caregivers
• Caregiver education
• # of placements
• # traumas
• Age at adoption
• Poverty threshold (corrected for family size)
• # of children in home
• Involvement in foster care or CPS

15. Complexity: Inter-child diversity
Inter-child diversity: each child with an FASD has a profile different from any other child.
Within the population overall, performance in each domain ranges from well below to well above average
Importance of interdisciplinary approach

16. Recognizing FAS: Alcohol’s Effect on the Brain
Key Words: VARIABILITY, COMPLEXITY, INDIVIDUAL DIFFERENCES
Cognition/intellectual functioning (mental retardation, learning difficulties)
Attention (hyperactivity, distractibility, attention deficits)
Learning and memory
Language (expressive/receptive, social communication)
Motor abilities (fine/gross, visual-motor coordination)
Sensorimotor integration, sensory processing
Executive functioning (planning/organization, impulsivity)
Social skills and adaptive behavior
Academic skill problems (especially math)

17. Complexity: Intra-Child “Scatter”

18. The challenge of documenting dysfunction in early childhood
Deficit pattern characteristics:
Initially mild deficits across multiple domains (deficits not severe enough to receive services)
Few assessment tools available to document functioning in domains other than general cognitive, general language, general motor
IQ scores not reflecting full range of deficits or extent of functional compromise
Whether or not caregivers are noticing behavioral or other challenges

19. Common behavioral and learning patterns in children with FASDs
Infants:
Often poor adaptation to sensory stimuli
Problems with increased or decreased muscle tone
Sleep disturbances common.
Motor development difficulties are often observed.
Preschool:
May be slow to acquire and understand language
May have motor deficits or delays
Difficulty regulating mood and emotions.

20. Cognitive & intellectual functioning
Mental retardation
Blunting of cognitive potential
Inter- and intra-domain differences
Verbal and nonverbal domain discrepancies
Subtest “scatter”
Guideline for general functional level
Not as accurate in this population

21. Cognitive & intellectual functioning
In the FAS-DPN, of 250+ children referred for diagnostic evaluation,
All had some evidence of behavioral/cognitive dysfunction
72% had IQ in the normal range
55% had neuropsychological deficits
63% had difficulties with aspects of language
71% had deficits in adaptive functioning

22. Adaptive functioning
Adaptive functioning in individuals with FASDs is lower than expected based on chronological age AND on cognitive levels
The “kid in the world,” “feels like” index
Adaptive deficits are typically secondary to other deficits (EF, etc.)
Also related to parenting/instructional factors
Often (mis)interpreted as motivational

23. Executive functions
SELF-REGULATION The ability to stay in control of emotions; awareness of how others perceive you; use of self-talk strategies to monitor self and behavior
SEQUENCING OF BEHAVIOR Knowing when and how to start an activity, keeping track of what to do next, initiating tasks.
FLEXIBILITY The ability to shift tasks smoothly, accept change, deal with transitions appropriately, absence of rigidity.

24. Executive functions (cont.)
RESPONSE INHIBITION Lack of impulsivity, ability to inhibit first “knee-jerk” response to difficult situations and think before acting.
PLANNING The ability to use mental and action steps to complete tasks, to anticipate what is needed to complete tasks, related to sequencing of behavior.
ORGANIZATION The ability to keep one’s self and materials organized, in order, predictable, etc.

25. Also related to EF
WORKING MEMORY Holding information in mind while performing action on it.
ATTENTION Maintaining and switching attention, distractibility.
MOTOR CONTROL AND SENSORIMOTOR PROCESSING
DIFFICULTY WITH ABSTRACT CONCEPTS AND LANGUAGE Literal interpretations

26. Executive function and behavior
Rage
Self-regulation, flexibility
Disorganization, messiness
Organization, planning, sequencing, +
Difficulty with transitions
Flexibility, self-regulation
Not finishing assigned
Sequencing, planning
Verbal conflicts
Response inhibition
Inefficiency
Organization, planning
Adaptive functions
All
Moodiness, lability
Self-regulation

27. Attention problems in FASD
Children with FASDs may have different patterns of attention deficits compared to children with ADHD
Deficits in attention may begin in infancy and continue through childhood and adolescence
Many have diagnoses of ADHD

28. Speech, language and communication problems in FASD
Motor speech disorders
Language learning disability
Specific language impairment
Pragmatic language deficits
Social communication deficits
Phonological processing deficits
Word finding problems

29. Neuropsychological complexity: what this means for intervention
The importance of assessing strengths as well as weaknesses.
Taking advantage of strengths
Recognizing opportunities to “catch” success
Prevent secondary disabilities
Improving self-concept

30. Intervention for FASDs
Interventions must be highly individualized because the families are so diverse and the impact of alcohol on the brain is so variable.
Treatment and family support must be sustained because neurodevelopmental disabilities are life-long.

31. Intervention: Brain and behavior in neurodevelopmental disorders
In the home, community, or classroom, focus can be on (is most effective when) changing behavior versus changing the child
Use accommodations
Remember that brain damage cannot be changed through motivation

32. Protective Factors Against Development of Secondary Disabilities in FASDs
Early diagnosis and intervention
A caregiving environment (in middle childhood) that is:
Nurturant, stable
Appropriately structured & stimulating
Geared to the child’s developmental needs
Free from caregiver substance abuse
Safe from violence
Appropriate social services
[Adapted from Streissguth et al., 1996]

33. Intervention recommendations
Monitor closely due to risk for developing future problems with learning, behavior, and attention as a result of level of prenatal alcohol exposure.
Close monitoring of development (regular intervals, establish baseline, address all areas)
Intervene early if problems detected (don’t wait)
Caregiver support, education, and collaboration
Behavioral consultation informed by functional assessment and the child’s individual profile
Linkage to community services and assistance with advocacy
Referral for medication evaluation (when needed)
Linkage with respite care

34. A key to intervention: Seeing things differently
“…at the heart of all compliance issues is a competency issue. We have to move from seeing behavior as noncompliance to seeing it as non-competence.” –Jan Lutke

35. From Diane Malbin, Trying Differently Rather than Harder

36. Reframed Interpretation
Behavior
Usual Interpretation
Reframed Interpretation
Inappropriate humor
Intentionally rude
Poor social skills, wants friends but doesn’t know how to make or keep them
Touching other children
Intentionally inappropriate
Unable to understand abstract concept of boundaries, acting his “developmental age”
Lying
Minimizing, denial, manipulation
Unable to grasp abstract concept of lying, wants to do the right thing but doesn’t understand how, so makes up answer to fill in the gaps.

37. FASD: Is there a “behavioral phenotype?”
“Features” commonly reported
“No conscience”
Doesn’t connect cause and effect
Lacks empathy
Reconsider in terms of neuropsychological functioning
Difficulty with abstract reasoning
Poor working memory
Challenges with social communication

38. Keys to intervention: adjust expectations
Adjust expectations based on neuropsychological profile (individualize education/parenting)
Benefits:
More successful interpretation and accommodations
Challenges:
More time-intensive, effortful for educators, caregivers

39. Accommodations: Alternatives to Frustration
“If you’ve told a child a thousand times and he still does not understand, then it is not the child who is a slow learner.”
—Walter Barbee
From the FAS: A Guide for Daily Living, BC Ministry for Children and Families

40. www.fasdpn.org FAS DPN Website
All Publications, Diagnostic Tools, Guides, Training Programs
and Diagnostic Request Forms
can be found on our website

41. FASD 4-Digit Diagnostic Guide, Software, and Training
All Diagnostic Tools and Courses available at cost or free on the web.
Training 4-Digit Online Course Diagnostic Team Training

42. Resources
Washington State FAS Interagency Work Group
NOFAS Washington Washington State Affiliate to National Organization on FAS
March of Dimes
Foster Parent Little Fox Video Series
National Organization on Fetal Alcohol Syndrome
NOFAS Washington State Chapter