1. Fetal Alcohol Spectrum Disorders Susan Adubato, Ph.D. Director New Jersey/NE FASD Education and Training Center UMDNJ-NJMS Newark, NJ adubatsu@umdnj.edu © 2012 NEW JERSEY/NE FASD EDUCATION AND TRAINING CENTER

2. Behold, thou shall conceive and bear a son: and now drink no wine or strong drink Judges 13:4

3. Modern concept of FAS was first identified in 1968 by the French (Lemoine et al) The term FAS was coined by Smith and Jones in the U.S. in 1973 to describe a constellation of characteristics noted in children examined by Dr. Ulleland

4. Collaborative Initiative on Fetal Alcohol Spectrum Disorders (NIAAA)   FAS is the leading preventable cause of IDs and DDs U.S.: 0.5-3/ 1000 Floyd, 2006 S. Africa: 65.2-74.2/ 1000 Viljoen, 9/2005 Italy: 3.7-7.4/ 1000 May, 9/2006 Sweden: 1-5/ 1000 Sampson, 1997 Russia: Phenotypic survey- 13% strong, 45% intermediate Miller, 2006 Finland: Dysmorphology in older Autti-Ramo, 2006 children

5. An individual with FAS can incur a lifetime health cost of over $870,000 to as high as $4.2 mil. In 2003, the estimated cost was $5.4 billion; direct costs were $3.9 billion and indirect costs were another $1.5 billion. FAS and related conditions are estimated to cost between $75 million and $9.7 billion annually in the United States. QALY reduced 17% or 11 years FASD Center of Excellence, 2005

7. Which substances affect women and their fetuses the most?  Alcohol  Tobacco  Heroin/ Methadone  Cocaine/ crack  Marijuana  Prescription Abuse  OTC Drugs  Inhalants/ Hallucinogens  Internet Pharmaceuticals  Methamphetamine

8. Defining the Standard Drink Source: National Institute on Alcohol Abuse and Alcoholism. (2005a). Helping patients who drink too much: A clinician’s guide, Updated 2005 Edition. NIH Pub. No. 07-3769. Bethesda, MD: U.S. Department of Health and Human Services.

9. Fetal Development Chart Fetal Development Chart

10. Susceptible periods during development CAP, 2005 NOFAS

11. Maternal Risk Factors ( May 2011) Maternal Risk Factors ( May 2011)  Dosage (blood alcohol level)  Pattern of drinking-1/4 Americans binge drink (SAMSHA, 2011)  Timing during the gestation (all three trimesters)  Advanced Age (older women(30+)more likely to drink more, and the fetus is more at risk for an FASD (Chiodo, 2010)  Genetic sensitivity and epigenetic factors (Kober and Weinberg 2011; Ramsay 2010)  Maternal metabolism/ Nutrition/Parity  Active teratogenic metabolites  Synergy with other agents (environmental/ other drugs)  Mental health issues and supports

12. Between 1978-2005, UCSD looked at the alcohol consumption of 992 women, every 3 months during pregnancy. For every additional drink they consumed, their babies had a 16% greater chance of being born smaller, and more likely to have birth defects ( Healthland, 2012). Between 1978-2005, UCSD looked at the alcohol consumption of 992 women, every 3 months during pregnancy. For every additional drink they consumed, their babies had a 16% greater chance of being born smaller, and more likely to have birth defects ( Healthland, 2012). 37% of all pregnancies are unplanned (CDC, 2012) 37% of all pregnancies are unplanned (CDC, 2012) One in twelve women admit to drinking during pregnancy; one in thirty say they binge, or consume 5+ drinks in one sitting. ( March of Dimes, 2012 ) One in twelve women admit to drinking during pregnancy; one in thirty say they binge, or consume 5+ drinks in one sitting. ( March of Dimes, 2012 )

13. Alcohol Crosses the Placenta Alcohol passes freely from the mother to the fetus Alcohol passes freely from the mother to the fetus The fetal liver cannot metabolize alcohol efficiently The fetal liver cannot metabolize alcohol efficiently Blood alcohol levels are equivalent between the woman and fetus by 1 hr. Blood alcohol levels are equivalent between the woman and fetus by 1 hr. (Cohen-Kareem, 2002) (Cohen-Kareem, 2002) Alcohol levels in amniotic fluid are lower but persist for longer (Burd, L. 2007) Alcohol levels in amniotic fluid are lower but persist for longer (Burd, L. 2007)

14. Risks of Consuming Alcohol First trimester First trimester Cell damage Cell damage Brain damage Brain damage Substantial structural changes Substantial structural changes Second trimester Second trimester Poor nutrition can retard the growth of tissue and organs Poor nutrition can retard the growth of tissue and organs Risk of miscarriage Risk of miscarriage Third trimester Third trimester Lower birth weight/overall amount of growth Lower birth weight/overall amount of growth Increase likelihood of early labor and delivery Increase likelihood of early labor and delivery Intellectual Disability Intellectual Disability ( March of Dimes, 2000) ( March of Dimes, 2000)

15. Brain Regions Affected by Alcohol

16. Structural Changes in the Brain In the top picture the brain of a non-surviving child with FAS is shown on the left next to that of a non-surviving child’s brain without FAS. The extent of malformation in the child’s brain with FAS was not compatible with life. The same brain is shown below. Note the lack of internal structures such as the corpus callosum which connects the two hemispheres.

17. What is FAS? Fetal Alcohol Syndrome (FAS) is a life long birth defect caused by maternal consumption of alcohol during pregnancy.

18. FAS Diagnostic Criteria Growth Restriction : Growth Restriction : Babies are born smaller than anticipated for the gestational age at birth, and usually remain so throughout life. Babies are born smaller than anticipated for the gestational age at birth, and usually remain so throughout life. Central Nervous System: Central Nervous System: Any or all of the following conditions may be present– intellectual disabilities, developmental delays, short attention span, impulsivity, perceptual problems, hyperactivity, poor coordination & learning disabilities. Any or all of the following conditions may be present– intellectual disabilities, developmental delays, short attention span, impulsivity, perceptual problems, hyperactivity, poor coordination & learning disabilities. Facial Anomalies: Facial Anomalies: Babies have the following distinctive facial features--small widely spaced eyes; a short, upturned nose; a smooth philtrum (no notch between the nose and lips); abnormally thin upper lip; and small flat cheeks. Babies have the following distinctive facial features--small widely spaced eyes; a short, upturned nose; a smooth philtrum (no notch between the nose and lips); abnormally thin upper lip; and small flat cheeks. (CDC, 2005) (CDC, 2005)

19. ( Reprinted with permission, Streissguth A.P., & Little, R.E. 1994) ( Reprinted with permission, Streissguth A.P., & Little, R.E. 1994)

23. FAS – Only the tip of the iceberg FAS – Only the tip of the iceberg  Fetal Alcohol Spectrum Disorders is a descriptive term used for the broad spectrum of disorders caused by prenatal exposure to alcohol including:  Fetal Alcohol Syndrome PFAS (Partial FAS) FAE (Fetal Alcohol Effects) ARND (Alcohol Related Neuro- developmental Disorders) ARBD (Alcohol Related Birth Defects)

24. FASD Fetal Alcohol Spectrum Disorders is an Fetal Alcohol Spectrum Disorders is an umbrella term describing the range of effects that can occur in an individual whose mother drank during pregnancy. These effects may include physical, mental, behavioral, and /or learning disabilities with possible lifelong implications. The term FASD is not intended for use as a clinical diagnosis. CDC July 2004 CDC July 2004

25. FAS FASD FAE ARND ARBD Partial FAS

26. Problem Domains of Individuals with Prenatal Alcohol exposure Cognition/Intellectual Functioning Activity and Attention Hyperactivity Hyperactivity Focusing, encoding, shifting Focusing, encoding, shifting Learning and Memory Auditory, spatial, design, and narrative memory Auditory, spatial, design, and narrative memory Working memory Working memory Intrusion, perseveration, false-positive errors Intrusion, perseveration, false-positive errors Comprehension, math reasoning Comprehension, math reasoning

27. Problem Domains of Individuals with Prenatal Alcohol exposure (cont) Language Social communication Social communication Word comprehension, naming ability, articulation Word comprehension, naming ability, articulation Expressive and receptive language skills Expressive and receptive language skills Motor Abilities Fine and gross motor dysfunction Fine and gross motor dysfunction Delayed motor development Delayed motor development Speed/precision, grip strength Speed/precision, grip strength Processing Abilities Spatial memory, processing of visual and auditory information Spatial memory, processing of visual and auditory information Difficulties in motor control and functioning Difficulties in motor control and functioning

28. Problem Domains of Individuals with Prenatal Alcohol exposure (cont) Other Neuropsychological Abilities/Executive Functioning Behavioral and emotional regulation-impulsivity, lability Behavioral and emotional regulation-impulsivity, lability Planning/organization Planning/organization Abstract thinking/judgment Abstract thinking/judgment Sensorimotor Integration Social Skills and Adaptive behavior Mental Health Issues

30. Clinical Implications of Impairments for Individuals with FAS/FASD Impulsivity and poor self-regulation, which decreases tolerance for frustration, and makes them quick to anger Impulsivity and poor self-regulation, which decreases tolerance for frustration, and makes them quick to anger Poor habituation which results in drowning in stimulation, emotional overload, shutting down and behaving irrationally Poor habituation which results in drowning in stimulation, emotional overload, shutting down and behaving irrationally Perseveration which leads to doing the same thing over and over again Perseveration which leads to doing the same thing over and over again

31. Clinical Implications of Impairments for Individuals with FAS/FASD (cont) Poor judgment which leads to trusting anybody and behaving irrationally Poor judgment which leads to trusting anybody and behaving irrationally Difficulty with self reflection which leads to not being able to express ones’ needs and not getting help Difficulty with self reflection which leads to not being able to express ones’ needs and not getting help

32. Common Disorders Identified with FASD Asperger’s Disorder Asperger’s Disorder Attention Deficit Hyperactivity Disorder (ADHD) Attention Deficit Hyperactivity Disorder (ADHD) Autistic Disorder Autistic Disorder Borderline Personality Disorder Borderline Personality Disorder Conduct Disorder Conduct Disorder Anxiety Anxiety Reactive Attachment Disorder Reactive Attachment Disorder Depression Depression Learning Disability Learning Disability Oppositional-Defiant Disorder Oppositional-Defiant Disorder Post Traumatic Stress Disorder (PTSD) Post Traumatic Stress Disorder (PTSD) Receptive-Expressive Language Disorder Receptive-Expressive Language Disorder Eating Disorders Eating Disorders

33. Secondary Disabilities Resulting from the Primary Disabilities of Individuals with FAS/FASD 60% have trouble with the law 60% have trouble with the law 50% will be confined in prison,mental institutions and/or treatment centers 50% will be confined in prison,mental institutions and/or treatment centers 35% have alcohol and/or drug problems 35% have alcohol and/or drug problems 61% have disrupted school experience 61% have disrupted school experience 49% exhibit inappropriate sexual behavior 49% exhibit inappropriate sexual behavior Other :joblessness, homelessness, inability to demonstrate effective caretaking and parenting, and increase potential for victimization, need for lifelong supervision Other :joblessness, homelessness, inability to demonstrate effective caretaking and parenting, and increase potential for victimization, need for lifelong supervision -Streissguth 2004 -Streissguth 2004

34. Universal Protective Factors Early diagnosis Stable, nurturing home environment No violence/victimization Early Intervention services DDD services Streissguth, 2004 Streissguth, 2004

35. Reconceptualizing the Behavior of the Individual with FASD Professionals, family members, and caretakers need to reconceptualize how we view the behavior of a individual with FAS/FASD From seeing:  To understanding: Won’tCan’t LazyTries hard LiesFills in Doesn’t tryExhausted or can’t start Doesn’t careCan’t show feelings Refuses to sit stillOver stimulated Fussy, demandingOversensitive ResistingDoesn’t “get it”

36. Common Positive Characteristics of Individuals with FASD Many individuals with FASD are: Many individuals with FASD are: Caring, kind, loyal, nurturing and compassionate Caring, kind, loyal, nurturing and compassionate Trusting, loving, determined, committed and persistent Trusting, loving, determined, committed and persistent Curious, involved, fair and cooperative Curious, involved, fair and cooperative Energetic, hard working and athletic Energetic, hard working and athletic Artistic, musical and creatively intelligent Artistic, musical and creatively intelligent

37. Best Practice One prevention model contains seven basic components, form the acronym SCREAMS One prevention model contains seven basic components, form the acronym SCREAMS Structure: a regular routine with simple rules and concrete, one step instruction, paired with examples Structure: a regular routine with simple rules and concrete, one step instruction, paired with examples Cues: verbal, visual, or symbolic reminders can counter the memory deficits Cues: verbal, visual, or symbolic reminders can counter the memory deficits Role models: family, friends, TV shows, movies that show healthy behavior and life styles Role models: family, friends, TV shows, movies that show healthy behavior and life styles Environment: minimized chaos, low sensory stimulation, modified to meet individual needs. Environment: minimized chaos, low sensory stimulation, modified to meet individual needs. Attitude: understanding that behavior problems are primarily due to brain dysfunction Attitude: understanding that behavior problems are primarily due to brain dysfunction Medications: most often the right combination of meds can increase control over behavior Medications: most often the right combination of meds can increase control over behavior Supervision: 24/7 monitoring may be needed for life due to poor judgment, impulse control. Supervision: 24/7 monitoring may be needed for life due to poor judgment, impulse control.

38. Guiding principles Think: “Stretched Toddler”. Think: “Stretched Toddler”. Remember: “Individuals with FASD will always need an external brain.” Remember: “Individuals with FASD will always need an external brain.” Acknowledge: Interventions must be useful to, and usable by the individual in order to be an intervention. Acknowledge: Interventions must be useful to, and usable by the individual in order to be an intervention. Foster: Inter-dependence. Foster: Inter-dependence. Reflect: Respect. Reflect: Respect. Promote: Self-worth. Promote: Self-worth.

39. Guiding principles Support:Self-esteem. Support:Self-esteem. Understand:That FASD is not “Chicken Pox.” You can’t catch it and it never goes away. Understand:That FASD is not “Chicken Pox.” You can’t catch it and it never goes away. Shift:From a “non-compliance” model to a “non- competence” model. Shift:From a “non-compliance” model to a “non- competence” model. Accept: Individuals with FASD do the best they can with what they’ve got at that time. Accept: Individuals with FASD do the best they can with what they’ve got at that time. Believe:You can make a difference. Believe:You can make a difference.

40. Additional Tips Concentrate on their strengths and talents Concentrate on their strengths and talents Accept individual’s limitation Accept individual’s limitation Be consistent with everything (discipline, school, behaviors) Be consistent with everything (discipline, school, behaviors) Use positive reinforcement often (praise, incentives) Use positive reinforcement often (praise, incentives) REPEAT, REPEAT REPEAT, REPEAT Honor their feelings Honor their feelings

41. New Jersey Regional Diagnostic Centers Six Regional Diagnostic, treatment and educational centers were established in New Jersey in 2002. Identify Identify Screen Screen Diagnose Diagnose Case Management Referral Case Management Referral Education Outreach Education Outreach

42. Comprehensive Assessment and Management of Individuals with FAS/FASD Team approach Team approach Multi-discipline assessment Multi-discipline assessment Psychosocial history Psychosocial history Physician Physician Disciplines (Mental health, speech, OT/PT, LD) Disciplines (Mental health, speech, OT/PT, LD) Parents/caregivers Parents/caregivers Social service agencies (DDD, SS, Child protective, drug treatment centers) Social service agencies (DDD, SS, Child protective, drug treatment centers) Case management Case management Diagnosis Diagnosis Early intervention and tracking Early intervention and tracking Stable home environment Stable home environment Medication Medication Case manager/mentor in school/home/communities Case manager/mentor in school/home/communities Support services-family community, educational, vocational Support services-family community, educational, vocational Supervised housing/residential facility Supervised housing/residential facility Special education and vocational rehabilitation Special education and vocational rehabilitation

43. Be good to me... Stay alcohol free! A few drinks can Last forever No safe time. No safe amount. No safe alcohol. Period …. NIAAA/NOFAS