Fetal Alcohol Spectrum Disorders: Competency V – Screening, Assessment, and Diagnosis The Arctic FASD Regional Training Center is a project of the UAA Center for Behavioral Health Research & Services. Funding for this project is provided by CDC Cooperative Agreement #U84DD

FASD and FAS Framework for FASD diagnosis and services FAS diagnostic criteria Considerations for referral Evaluation of fetal alcohol spectrum disorders in Alaska Road map for presentation

FASD AND FAS

What are fetal alcohol spectrum disorders? Umbrella term Range of neurological and other effects that can occur in an individual whose mother drank alcohol during pregnancy Adapted from State of Alaska Division of Health and Social Services and the University of Alaska Anchorage Department of Social Work (2010). FASD201: Developing Successful Interventions and Supports.

5 Effects can include physical, mental, behavioral, and/or learning disabilities Life-long implications Not intended for use as a clinical diagnosis Adapted from State of Alaska Division of Health and Social Services and the University of Alaska Anchorage Department of Social Work (2010). FASD201: Developing Successful Interventions and Supports. What are fetal alcohol spectrum disorders?

Fetal Alcohol Syndrome (FAS) A disorder resulting from prenatal alcohol exposure Characterized by abnormalities in 3 domains FASDs encompasses FAS Covers all other diagnoses that refer to the neurological damage that can occur as a result of prenatal alcohol exposure. FASDs and FAS

Reprinted from the 10th Special Report to Congress on Alcohol and Health, NIAAA, 2000 Facial dysmorphia Indistinct philtrum Small palpebral fissures Thin upper lip Growth restrictions Central nervous system dysfunction Characteristics of FAS

FRAMEWORK FOR DIAGNOSIS AND SERVICES

Framework for diagnosis

Identification comes from many sources Parent School Social service system Healthcare providers Well-child visits allow providers to screen for FASD “Triggers” for further assessment include facial abnormalities, growth delays, developmental problems, or maternal alcohol use Initial identification

Initiated when provider suspects alcohol- related disorder Key elements in referral process Initial evaluation gathering data related to four FAS diagnostic criteria Determine whether child meets criteria Yes? Diagnose and refer for further assessment No? Monitor over time Referral

Confirm diagnosis Dysmorphic and anthropometic assessment Neurodevelopmental evaluation data Develop an intervention plan Multidisciplinary approach Assessment and diagnosis

DIAGNOSTIC CRITERIA

Presence of facial dysmorphia Growth deficits Central nervous system (CNS) abnormalities Prenatal alcohol exposure Diagnostic criteria

Effects of alcohol on developing fetus depend on: Timing Amount Frequency Alcohol use early in pregnancy may result in facial anomalies Clinical features most often associated with FAS are facial anomalies Presence of facial dysmorphia

Smooth philtrum Thin vermillion border Small palpebral fissure Distance from the inner to outer corner of the eye Reprinted from the 10th Special Report to Congress on Alcohol and Health, NIAAA, 2000 Presence of facial dysmorphia

Growth problems The FAS Guidelines Report (2004) proposes growth criteria Confirmed deficient prenatal or postnatal height/weight/both Adjust for age, sex, gestational age, and race or ethnicity Ensure that growth deficit does not correlate with a point in time when the individual was nutritionally deprived.

Growth problems Factors to consider in growth assessments: Nutrition Environment Genetics Differential diagnoses should be considered Use CDC’s 2000 Growth Charts:

Abnormalities can be structural, neurological, and/or functional Documentation of problems in one or more of these areas is necessary for the FAS diagnosis Central nervous system abnormalities

Structural Head circumference Neurological Coordination problems Difficulty with motor control Nystagmus (uncontrolled movement of the eye from side to side) Central nervous system abnormalities

Functional deficits: areas of impairment or disability that result from problems in the functioning of the central nervous system. Two ways to determine presence of functional deficits Performance substantially below that expected for a person’s age, schooling, or circumstances Functional deficits below the 16th percentile in at least three areas Central nervous system abnormalities

Functional deficits 1 standard deviation below the mean for standardized testing in at least three of the following areas: Cognitive or developmental deficits Executive functioning deficits Motor functioning delays Problems with attention or hyperactivity Social skills problems Other (such as sensory problems, pragmatic language problems, memory deficits, etc.) Central nervous system abnormalities

Importance of differential diagnosis of CNS abnormalities Rule out other disorders Specify co-occurring disorders External factors may produce similar deficits that are affected by FAS CNS deficits should be evaluated in conjunction with other findings Central nervous system abnormalities

Maternal alcohol exposure Documenting maternal alcohol exposure is important but often difficult to obtain Birth mothers may be hesitant to admit use during pregnancy Many children are from foster or adoptive home Obtaining this information is important but not critical to making a diagnosis

CONSIDERATIONS FOR REFERRAL

Considerations for a referral for diagnostic evaluation Decision to refer for diagnosis often falls to front-line service providers Fear of social stigma often an issue Evidence of maternal alcohol use Decision to refer should be made case-by-case The 2004 guidelines provide assistance

Considerations for a referral for diagnostic evaluation Known alcohol exposure Refer for full evaluation when confirmed significant maternal alcohol use during pregnancy: 7 or more drinks per week or, 3 or more drinks on multiple occasions or, both Primary healthcare provider should document exposure and closely monitor the child’s ongoing growth and development

Unknown prenatal alcohol exposure Refer for full evaluation when: There is any report of concern by a parent or caregiver that child has or might possibly have an FASD All three facial features are present Any combination of facial features, CNS abnormalities, height/weight deficiencies are present Considerations for a referral for diagnostic evaluation

EVALUATION OF FETAL ALCOHOL SPECTRUM DISORDERS

Characteristics of fetal alcohol spectrum disorders Individuals may have some, but not all, characteristics of FAS Not enough to meet diagnostic criteria for FAS Often do not exhibit characteristic facial features Facial features of FAS thought to be secondary to impact of alcohol on early brain development

Characteristics of fetal alcohol spectrum disorders Most damaging effects of prenatal alcohol exposure may not be visible Prenatal alcohol exposure affects central nervous system (CNS) functioning Consistent deficits among individuals with prenatal alcohol exposure Verbal learning and memory Attention Abstract & practical reasoning Executive functioning Social skills

FASD EVALUATION IN ALASKA

Evaluating FASDs in Alaska Alaska follows a diagnostic model developed at the University of Washington called “The 4-Digit Code” Accurate, reproducible, and unbiased Multidisciplinary teams assess the severity of these four independent criteria. There are currently ten teams operating in Alaska.

Typical members of a diagnostic team Team coordinator Physician/medical provider Parent navigator/family advocate Occupational and/or physical therapist Clinical and/or school psychologist Speech and language pathologist

Four-digit code Includes independently ranked characteristics: Growth deficiency FAS facial features or “FAS phenotype” Central nervous system damage/dysfunction Maternal drinking during pregnancy 256 diagnostic codes, grouped into 22 diagnostic categories Does not require confirmed prenatal alcohol exposure

Diagnostic code example

Framework for diagnosis and services FAS diagnostic criteria Considerations for referral Evaluation of FASDs In closing….

Arctic FASD Regional Training Center The Arctic FASD Regional Training Center is a project of the UAA Center for Behavioral Health Research & Services. Funding for this project is provided by CDC Cooperative Agreement #U84DD