Working with Children with Fetal Alcohol Spectrum Disorders Allison D. Brooks, Ph.D.

Licensed Psychologist Washington State FAS Diagnostic & Prevention Network FAS DPN

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 Prevention Training Research

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

criteria is also part of the diagnostic

Fetal Alcohol Syndrome What is FAS?

Growth deficiency (ht or wt below the 10 th 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.

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.

The Three Diagnostic Facial Features of FAS 1) Short PFL 2) Smooth Philtrum 3) Thin Upper Lip <= -2 SD Rank 4 or 5 Rank 4 or 5 FAS Palpebral fissure length (PFL) = endoncanthion to exocanthion

FAS Facial Features

The Brain of FAS?

Slide courtesy of Sterling Clarren

The teratogenic impact of alcohol on the developing brain

• CNS and brain develop throughout – No “safe” time (early or late) gestation • Outcomes are variable because (in part) – Different structures and connections develop at different times • Neuronal migration is affected by alcohol

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

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.

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.

Alcohol is not the only explanation

• Other prenatal – Prenatal care risk factors – Exposure to other substances – Exposure to other teratogens – Genetic contributions • Postnatal risk factors – Medical history – Social history

Postnatal Risk Factors Impacting Outcomes in Children with FASDs

Weighted Cumulative Risk Factors

20% 15% 10% 5% 0% 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19

risk index

• # 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

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

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)

Complexity: Intra-Child “Scatter”

MOTOR PERCENTILE RANK 100 95 90 85 80 75 70 65 60 55 50 45 40 35 30 25 20 15 10 5 PERCENTILE RANK COGNITIVE X COGNITIVE ADAPTIVE LANGUAGE X ADAPTIVE X LANGUAGE X MOTOR MEMORY X MEMORY EXECUTIVE FUNCTION PERCENTILE X EXECUTIVE FUNCTION 100 95 90 85 80 75 70 65 60 55 50 45 40 35 30 25 20 15 10 5 PERCENTILE RANK

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

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.

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

Cognitive & intellectual functioning

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

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

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 how to start an activity, keeping track of what to do next, initiating tasks.

Knowing when and • FLEXIBILITY The ability to shift tasks smoothly, accept change, deal with transitions appropriately, absence of rigidity.

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.

Also related to EF

• WORKING MEMORY Holding information in mind while performing action on it.

• ATTENTION distractibility.

Maintaining and switching attention, • MOTOR CONTROL AND SENSORIMOTOR PROCESSING • DIFFICULTY WITH ABSTRACT CONCEPTS AND LANGUAGE Literal interpretations

Executive function and behavior

Behavior

Rage Disorganization, messiness Difficulty with transitions Not finishing assigned Verbal conflicts Inefficiency Adaptive functions Moodiness, lability

Executive Function

Self-regulation, flexibility Organization, planning, sequencing, + Flexibility, self-regulation Sequencing, planning Response inhibition Organization, planning All Self-regulation

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

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

Neuropsychological complexity: what this means for intervention

• The importance of assessing strengths well as weaknesses.

as – Taking advantage of strengths – Recognizing opportunities to “catch” success – Prevent secondary disabilities – Improving self-concept

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.

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

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]

Intervention recommendations

• Monitor closely – Intervene early 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) if problems detected (don’t wait) • Caregiver • Linkage to support, education, and collaboration • Behavioral consultation informed by functional assessment and the child’s individual profile community services and assistance with advocacy • Referral for medication evaluation (when needed) • Linkage with respite care

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

Change from se eing the child as one who (is)

W o nÕ Bad Lazy Lies Doesn Õ Mean Doesn Õ Refuses to sit still Fussy, demanding Resisting Trying to make me mad Trying to get attention Acting younger Thief Doesn Õ Inappropriate Not trying (to get the obvious)

To understanding the child as one who (is):

Can Õt Frustrated, Challenged Tries hard Confabulates/ fills in/ makes sense of world Doesn Õ Defensive, hurt, abused, Follows peers Can Õt Overstimulated Sensory defensiveness Doesn Õ Can Õt Needing contact, support Being younger Doesn Õ Tired of always failing Not understanding social rules and norms Needing many reteachings From Diane Malbin, Trying Differently Rather than Harder

Behavior Usual Interpretation Reframed Interpretation Inappropriate humor Intentionally rude Touching other children Intentionally inappropriate Lying Minimizing, denial, manipulation Poor social skills, wants friends but doesn’t know how to make or keep them Unable to understand abstract concept of boundaries, acting his “developmental age” 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.

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

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

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

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

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

www.fasdpn.org

Resources

• Washington State FAS Interagency Work Group http://www.fasdwa.org

• NOFAS Washington Washington State Affiliate to National Organization on FAS http://www.nofaswa.org

• March of Dimes http://www.modimes.org

• Foster Parent Little Fox Video Series http://www1.dshs.wa.gov/ca/Fosterparents/journey.

asp • National Organization on Fetal Alcohol Syndrome http://www.nofas.org

• • NOFAS Washington State Chapter www.nofaswa.org