Born Drunk, Living with Fetal Alcohol Spectrum Disorders (FASD)

1. Susan Rose Executive Director of the Fetal Alcohol Support Network of New York City and Long Islandwww.fassn.org 718-279-1173 Dianne O’Connor NYS OASAS Born Drunk, Living with Fetal Alcohol Spectrum Disorders (FASD)

2. Course Objectives: Part 1: What is FASD? Participants will: • Identify the difference between FAS and FASD • Identify the basic diagnostic criteria for identifying an FAS/D

3. Course Objectives:The ultimate GOAL…to prevent alcohol exposed births

4. Ellen and MalcolmVOL 181, No.2.National Geographic THE WORLD AS THEY SEE IT Text and photographs by GEORGE STEINMETZ Ellen O’Donovan (pseudonym) was losing her fight against alcoholism when she discovered she was pregnant. Months later her son was born with fetal alcohol syndrome, and his battles began.

5. Fetal Alcohol Spectrum Disorders (FASD) • Umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy • May include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications • Not a clinical diagnosis

6. Terminology • Fetal Alcohol Syndrome (FAS) • Fetal Alcohol Effects (FAE) • Alcohol-related birth defects (ARBD) • Alcohol-related neurodevelopmental disorder (ARND) • Partial FAS (pFAS) Pregnancy Alcohol + May result in FASD

7. For every child born with full FAS, there are FIVE children born with invisible yet serious Fetal Alcohol Effects (FAE). Together FAS and FASD make up what is called Fetal Alcohol Spectrum Disorders (FASD). Fetal Alcohol Syndrome is only the tip of the iceberg.

8. No one knows for certain how many individuals are born each year with an FASD or living with an FASD. It is estimated that 1 in every 1,000 births has FAS. It is estimated that 1 in every 100 births has an FASD. Number of People With an FASD(May and Gossage, 2001 – http://www.niaaa.nih.gov/publications/arh25-3/159-167.htm).

9. “When Malcolm was born, I thought my heart would break,” she said. “And, oh my God, the guilt…I didn’t even know I was pregnant. That’s the tragedy of it.” Ellen and Malcolm

10. FASD Facts • 100 percent preventable • Leading known cause of preventable mental retardation • Not caused on purpose • Can occur anywhere and anytime pregnant women drink • Not caused by biologic father’s alcohol use

11. What About the Guys? Can a father’s drinking cause FASD? NO • A father’s drinking during or before pregnancy does not directly cause FASD. • However, problems have been found in offspring of males who abuse alcohol. • A woman’s drinking behavior is greatly influenced by the drinking behavior of her partner, family, and friends.

12. Cause of FASD • The sole cause of FASD is women drinking alcoholic beverages during pregnancy. • Alcohol is a teratogen. (dose, timing, maternal and fetal status) “Of all the substances of abuse (including cocaine, heroin, and marijuana), alcohol produces by far the most serious neurobehavioral effects in the fetus.” —IOM Report to Congress, 1996

13. All alcoholic beverages are harmful. Binge drinking is especially harmful. (Binge = 4 or more drinks on one occasion for a women, 5 or more for a man) There is no proven safe amount of alcohol use during pregnancy. FASD and Alcohol

14. Little is known about the thresholds of alcohol that cause FAS. Genetics may also be a factor. Even with fraternal twins one might have severe FAS, while the other is mildly affected. Not all mothers who drink have FAS babies. Some doctors believe that any alcohol puts the baby at risk, while nearly all agree that binge drinking is perilous, especially during the first 12 weeks, when signs of pregnancy are few. Ellen and Malcolm

15. A Variable: Gestational TimingColes C. Critical periods for prenatal alcohol exposure. Alcohol Health Res World. 1994;18:22-29.) Dark bars-most sensitive periods of development; Lighter bars represents periods of development during which psychological defects and minor structural abnormalities would occur.

16. Growth deficiency in height and/or weight Specific differences in facial characteristics Damage to the central nervous system Evidence of mother drinking while pregnant Identifying FAS: What to Look For Photo courtesy of St. Louis Arc

17. Stunted Growth in a Child

18. Facial Characteristics: FAS Panel: Streissguth, 1994, 1996

19. FacialChangesinFAS Birth 8 months old 4 years old 14 years old Short palpebral fissures Indistinct philtrum Thin upper lip

20. Growth deficiency in height and/or weight Specific differences in facial characteristics Damage to the central nervous system Evidence of mother drinking while pregnant Identifying FAS: What to Look For Photo courtesy of St. Louis Arc

21. Prenatal alcohol exposure causes brain damage. Effects of FASD last a lifetime. People with an FASD can grow, improve, and function well in life with proper support. FASD and the Brain

22. FAS and the Brain

23. FAS and the Brain A. Magnetic resonance imaging showing the side view of a 14-year-old control subject with a normal corpus callosum; B. 12-year-old with FAS and a thin corpus callosum; C. 14-year-old with FAS and agenesis (absence due to abnormal development) of the corpus callosum. Source: Mattson, S.N.; Jernigan, T.L.; and Riley, E.P. 1994. MRI and prenatal alcohol exposure: Images provide insight into FAS. Alcohol Health & Research World 18(1):49–52.

24. Head circumference Intellectual impairment Memory problems Delayed development Attachment concerns ADD/or hyperactivity Impaired motor skills Problems with reasoning Learning disabilities problems with judgment Inability to see consequences of actions Neurodevelopental disorder(This is not an all-inclusive list of conditions. More than one may be identified, but not all conditions must be present)

25. General Cognitive/Learning Skills (IQ) Executive Functioning Skills Attentional regulation Memory,Planning and organization Academic Achievement Math Motor skills Visual/spatial skills Adaptive Behavior Social Behavior Mental Health/Behavioral Disorders Working Memory Impatient (Neuro) Behavioral Outcomes and Functional Deficits Examined in FASD Claire Coles, PhD, 2005

26. Documentation and confirmation of prenatal alcohol exposure can be extremely challenging. For birth mothers, admission of alcohol use during pregnancy can be very stigmatizing. • Confirmed prenatal alcohol exposure • Unknown prenatal alcohol exposure http://www.cdc.gov/ncbddd/fas/documents/FAS_guidelines_accessible.pdf

27. General Issues in FASD • Often undiagnosed, especially in adolescents, adults, and persons without facial features of FAS • More difficulties seen in those without the facial features and with higher IQs • Adaptive functioning significantly more impaired than IQ www.fassn.org

28. Asperger’s Disorder ADHD Autistic Disorder Borderline Personality disorder Conduct Disorder Depression Learning Disability ODD Post Traumatic Stress Expressive-Receptive Language Disorder Common disorders identified with FAS/ARND

29. Overall Difficulties for Persons With an ARND • Taking in information • Storing information • Recalling information when necessary • Using information appropriately in a specific situation Information

30. General intelligence Mastery of reading, spelling, and arithmetic Level of adaptive functioning; more significantly impaired than IQ Primary Disabilities in Persons With FASDUnderstanding the Occurrence of Secondary Disabilities in Clients with FAS and FAE,,Streissguth, 1996 www.mapcl.org/Jobs4.html

31. Secondary Disabilities in Persons With FASD • Mental health issues – 94% • Dependent living – 83% • Problems with employment – 79% • Trouble with the law – 60% • Confinement – 50% • Inappropriate sexual behavior – 45% • Disrupted school experience – 43% • Alcohol and drug problems – 35% Streissguth, et al. (1996)

32. Protective Factors Against Secondary DisabilitiesUnderstanding the Occurrence of Secondary Disabilities in Clients with FAS and FAE,,Streissguth, 1996 • Stable, good quality home • Not having frequent changes of homes • Not being a victim of abuse, neglect, or violence • Receiving developmental disabilities services • Diagnosed before the age of 6

33. Overly sensitive or under- responsive to stimulation Lack of stranger anxiety Possible attachment difficulties Severe temper tantrums Infancy and Early ChildhoodTools for Success, MOFAS, 2006 • Fitful sleep • patterns • Poor suck reflex • Poor muscle tone, • which can delay • walking and toilet • training • Small for height • and weight

34. Possible hyperactivity Poor memory Lack of impulse control Poor social skills Failure to understand consequences Very concrete thinking Onset of academic problems Middle ChildhoodTools for Success, MOFAS, 2006 www.fassn.org

35. Less obvious FAS facial features Academic plateau Poor judgment and impulsivity Depression, anxiety, and/or mood swings Alcohol/drug use High risk of pregnancy May become slightly obesity May function better in the evening AdolescenceTools for Success, MOFAS, 2006 www.fassn.org

36. Increased need for abstract thinking Increased desire for independence; focus on adolescent’s safety Unrealistic expectations of others Increased need to problem-solve and use good judgment Victimization Socially inappropriate behavior Lying, stealing, antisocial behavior Adolescence“Sharing Stories…Finding Hope”, CDC/The Arc 2003 www.fassn.org

37. Program issues when working with an individual with an FASD Possible strategies for better outcomes Part 2

38. Issues in Child Welfare for Parents With an FASD • They appear to be uninterested or neglectful • They don’t show up for their appointments or scheduled visits on time or at the right time • They don’t complete treatment • They don’t go to meetings every day and get a signed statement that they were there • They don’t call their children at the designated times

39. Typical Treatments Must Often Be Adapted for Those With an FASD • For those with a fetal alcohol spectrum disorder, prevention interventions must be adapted due to: • Difficulty with verbal receptive language processing • Difficulty with multiple directions and multiple tasks • Difficulty processing information on one’s own • Difficulty following through on one’s own • Modeling the behavior of those around them • Difficulty in group situations • Do better one-to-one

40. Expectations of “Consequence-Based Behavior Modification” May Not Work! • Hear and understand consequences • Link consequence with behavior • Apply to future behaviors • Predict outcomes • Retrieve previous information • Recall all possible consequences • Integrate the recollections and predictions automatically and adjust behavior accordingly “Tools for Success”, MOFAS, 2006

41. So, What Does Work? • Experience is a good teacher. • Base practices on the individual’s needs. • Plan for success.

42. Is not consequence-based Works as well as consequence-based methods Effects changes in the relationship between the “teacher” and the learner Successful Behavior Management • Understands the behavior • Is different than we’ve practiced • Anticipates problems • Constructs rules that work • Don’t criticize, reward good behavior

43. Explained Based on input from staff or youth Few in number Simple Have staff commitment Constructing Program Rules • Positive terms • Clear and concise • Written down Source: Roush, 1996

44. Strategy: Direct Therapeutic Intervention PRINCIPLES: • Accommodation vs. Cure: Can’t “cure” the existing brain damage • Change the environment, not the person (physical environment, attitudes) • Individualize: Base intervention on the person’s unique neuropsychological and health profile • Adapt interventions: Alter existing interventions based on individual’s learning style, memory problems, attention deficits, etc. • Maintain intervention: Consistency • Involve others Therese Grant, PhD, 2006

45. Strategy: Comprehensive Prevention Intervention Therese Grant, PhD, 2006 • PRINCIPLES: • Multi-systemic (medical care; mental health; school; • social service; vocational training agency; social • services; family; church) • Multi-modal (individual therapy; family therapy; medication; vocational training/job coaching; case management; support groups) • Individualized (based on comprehensive assessment) • Life-span perspective (sustain the support) • Family-based(involve caregivers/advocates)

46. Strategies When TreatingClients with FASD • Use short sentences, concrete examples, and be careful using analogies • Present information using multiple modes • Simple step-by-step instructions (written and/or with pictures) • Role-playing • Ask patient to demonstrate skills (don’t rely solely on verbal responses) • Revisit important points during each session

47. Strategies for Improving Outcomes for Individuals With an FASD Be aware of language used: Use person first language Use Literal Language Do not use metaphors or similes Do not use idiomatic expressions Think about how what you say could be misinterpreted

48. Primary disabilities and strategies for working with an individual with an FASD Part 3

49. Primary Disabilities in Persons With an FASD • Lower IQ • Impaired ability in reading, spelling, and arithmetic • Lower level of adaptive functioning; more significantly impaired than IQ • Cannot Entertain themselves • Have trouble changing tasks • Do not accurately pick up on social cues Age 21: Graduation from high school, Photo courtesy of www.fasstar.com Streissguth, et al. (1996)

50. Comparing FASD, ADHD and Oppositional Defiant Disorder Ellen Lally, Ed.D LCSW, Dan Dubovsky, MSW; 2005