FASD

1. FASD Indiana FASD Prevention Taskforce Working to Prevent Fetal Alcohol Spectrum DisordersThrough High School and Middle School CurriculaThis presentation was designed for use in Educating Teachers, Administrators and Others Who Work with Children in the School System.

2. FASD Indiana FASD Prevention Taskforce Fetal Alcohol Spectrum Disorders:What They Are and How They Impact Your Students

3. FASD History of Fetal Alcohol Spectrum Disorders • The effects of parental alcohol use have been known since the time of Aristotle • First described in the literature by Jacqueline Rouquette in 1957, although the French physician Paul Lemoine (1968) is credited with the first publication www.nlm.nih.gov/hmd/greek/ greek_aristotle.html

4. FASD History of Fetal Alcohol Spectrum Disorders • First identified in the US in 1973 by Jones and Smith, who coined the term “fetal alcohol syndrome” • As of 1989, all alcohol beverages sold in the US must carry a warning that drinking during pregnancy can cause birth defects www.fasdcenter.samhsa.gov

5. FASD History of Fetal Alcohol Spectrum Disorders • In 1978, the term “fetal alcohol effects” (FAE) was coined to describe conditions that are presumed to be caused by prenatal alcohol exposure but don’t meet the diagnostic criteria of FAS • In 1996, the Institute of Medicine of the National Institutes of Health proposed the terms partial FAS, alcohol-related neurodevelopmental disorder (ARND), and alcohol-related birth defects (ARBD) • Now considered “fetal alcohol spectrum disorders”

6. FASD History of Fetal Alcohol Spectrum Disorders • “Fetal alcohol spectrum disorders (FASD) is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol 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.” National Taskforce on Fetal Alcohol Syndrome and Fetal Alcohol Effects, 2004

7. FASD Fetal Alcohol Spectrum Disorders (FASD) Possible Diagnoses • Fetal alcohol syndrome (FAS) • Partial FAS (pFAS) • Alcohol-related neurodevelopmental disorder (ARND) • Alcohol-related birth defects (ARBD) + = FAE (fetal alcohol effects) is an older term used to describe the last three listed above.

8. FASD On any given day in the United States… • 10,657 babies are born • 1 of these babies is HIV positive • 3 of these babies are born with muscular dystrophy • 4 of these babies are born with spina bifida • 10 of these babies are born with Down syndrome • 20 of these babies are born with FAS • 100 of these babies are born with a FASD From the Executive Summary of the IOM Report. FAS Community Resource Center. http://www.come-over.to/FASCRC

9. FASD How Common is FAS and FASD? • The prevalence of FAS is estimated to be about 1 in 500 to 1 in 1000 births • The prevalence of FASD is estimated to be nearly 1 in 100 births Eustance LW et al., 2003

10. FASD How much is too much? • The more alcohol consumed during pregnancy, the higher the risk for adverse effects • Binge drinking is particularly harmful! • No amount of alcohol has been proven ‘safe’ to consume during pregnancy • Every FASD is 100% preventable!

11. FASD What is a Drink? A Binge is four or more drinks on one occasion for a woman; five or more for a man A Drink is 12 ounces of beer, five ounces of wine, or 1.5 ounces of hard liquor = =

12. FASD The Effect of Alcohol on a Baby’s Development • Alcohol freely crosses the placenta from the mother to the baby • Blood alcohol levels of the baby are approximately equal to that of the mother, within minutes of consumption • The critical period is the entire pregnancy

13. FASD Brain and nervous system Heart Limbs Lips and palate Eyes Ears The Effect of Alcohol on a Baby’s Development Development of the brain is occurring throughout the pregnancy, which means that alcohol exposure at any point may cause brain damage. Figure from http://www.fda.gov/cber/gdlns/rvrpreg_fig1.gif

14. FASD The Diagnosis of FAS Defined by four criteria: • Exposure to alcohol while in the womb • Characteristic facial features • Growth problems • Involvement of the central nervous system (the brain)

15. FASD FAS Facial Features pubs.niaaa.nih.gov NOTE: Although these features are associated with fetal alcohol syndrome, they may also be seen in people who do not have a FASD.

16. FASD FAS Facial Features: Smooth Philtrum and Thin Upper Lip Smooth philtrum (little to no groove above upper lip) Thin upper lip

17. FASD FAS Facial Features: Short Palpebral Fissures (Eye Openings) Eyes are measured from the outer corner to the inner corner

18. FASD FAS Facial Features www.come-over.to/FAS/JohnGrowsUp.htm

19. FASD The Effect of Alcohol on Growth • Alcohol consumption increases the risk for having a baby with growth problems • After birth, exposed children may continue to have a decreased growth rate and subsequent short stature Day and Richardson, 2004, AJMG 127C:28-34. www.cdc.gov/growthcharts

20. FASD Alcohol Affects Overall Brain Size Brain of a healthy baby Brain of a baby exposed to alcohol Photo by Sterling Clarren, MD http://www.come-over.to/FAS/FASbrain.htm

21. FASD Alcohol Affects Brain Function • Developmental delays • Learning difficulties • Mental retardation • Speech/language disorders • Problems with memory, perception, sensory integration, or tactile defensiveness

22. FAS Normal • Neurological differences often appear as: • Slower processing speed (thinking, hearing, etc.) • Problems storing and retrieving information • “Gaps,” difficulty forming links or associations • Difficulty generalizing • Difficulty with abstract concepts • Problems seeing next steps or outcomes • Disconnections (says one thing but does another) • Grasps pieces rather than concepts Malbin D. 2002

23. A teenager with a FASD, who is 18 years old, may function at the level of a child or adolescent Emotional maturity Comprehension Social skills Concepts of money and time Living skills Reading ability Physical maturity 6 years 6 years 7 years 8 years 11 years 16 years 18 years Skill Developmental Age Equivalent Adapted from: www.efsmanitoba.com/html/Final%20Paper%20Defining%20Needs%20of%20women%20with%20FAS_E2.htm

24. FASD Primary vs. Secondary Disabilities • Primary disabilities result from brain damage due to the alcohol exposure • Secondary disabilities develop over time due to lack of intervention and unmet needs • they are believed to be preventable

25. Mental health issues Disrupted school experiences Inappropriate sexual behavior Trouble with the law Confinement in jail or treatment facilities Alcohol and drug problems Dependent living Employment problems FASD Secondary Disabilities in FASD http://come-over.to/FAS/

26. Secondary Disabilities www.fasdcenter.samhsa.gov

27. FASD Long Term Consequences of FAS • Only 3% of children lived with biological mother • Independent living was uncommon • Poor behavior was common • Average academic function was between 2nd and 4th grade (Streissguth et al. 1991)

28. FASD The Cost of FAS • The comprehensive lifetime cost of one baby with FAS is at least $2 million • The cost to American taxpayers for FAS is estimated to be $5 million a day, or up to $6 billion each year Lupton, et al. 2004; Substance Abuse and Mental Health Services Administration

29. FASD Strengths of Individuals with a FASD • Friendly • Likeable • Helpful • Determined • Loving, caring, kind, sensitive, loyal and compassionate • Energetic and hardworking • Have points of insight • Not malicious • Cuddly and cheerful • Happy in an accepting and supportive environment • Fair and cooperative • Spontaneous, curious, and involved

30. FASD Strengths of Individuals with a FASD • Highly verbal • Highly moral with a deep sense of fairness • Kind with younger children and animals • Creative • Eager to please

31. FASD Strengths of Individuals with a FASD • Learn by doing, by being shown, and/or by relationship • Learn through consistency, continuity, and relevance • Able to participate in problem solving with appropriate support • Often have a strong long-term visual memory

32. Working with individuals with a FASD

33. FASD Working with Individuals with a FASD • Build on strengths • Use teaching strategies that focus on these strengths

34. FASD A Paradigm Shift “We must move from viewing the individual as failing if s/he does not do well in a program to viewing the program as not providing what the individual needs in order to succeed.” - Dubovsky, 2000

35. FASD Systems of Care for Those with a FASD • Healthcare services • Educational services • Social and community services • Legal and financial services

36. FASD Management of Children with a FASD • Physical, occupational, and speech therapies • Psychiatrist or psychologist • Medications for ADHD, anxiety, depression, seizures, explosive behavior, etc. • Counseling • Pediatrician or developmental pediatrician familiar with FASD • Other specialists as needed

37. FASD Strategies for Working with Individuals Who Have a FASD • For executive function deficits: • Use short-term consequences specifically related to the behavior • Establish achievable goals • Provide skills training and use a lot of role playing

38. FASD Strategies for Working with Individuals Who Have a FASD • For information processing problems: • Check for understanding • Use literal language • Teach the use of calculators and computers • Look for misinterpretations of words or actions and discuss them when they occur

39. FASD Strategies for Working with Individuals Who Have a FASD • For memory problems: • Provide one direction or rule at a time and review rules regularly • Provide repetition of instructional strategies • Use frequent reminders

40. FASD Strategies for Working with Individuals Who Have a FASD • For sensory integration issues: • Simplify the individual’s environment • Take steps to avoid sensory triggers, which may include: • Wearing clothes with tags or clothes made of certain fabrics • Being in overly stimulating environments (i.e. crowded and loud places) • Being in the presence of bright lights

41. FASD Strategies for Working with Individuals Who Have a FASD • For self-esteem and personal issues: • Use person-first language • Do not isolate the person • Address issues of grief and loss • Do not blame people for what they cannot do • Set the person up to succeed

42. FASD Strategies for Working with Individuals Who Have a FASD • To facilitate communication: • Use a slow pace and soft tone • Use simple, concrete directions and cues • Use more than one form of communication • Avoid the use of idioms • Avoid sarcasm • Use simple, clear language

43. FASD Strategies for Working with Individuals Who Have a FASD • To facilitate learning: • Allow longer periods to learn and/or complete tasks • Break skills into smaller steps • Use concrete examples • Teach skills in the environment in which they are to be used

44. FASD Strategies for Working with Individuals Who Have a FASD • Provide a stable, predictable nurturing environment • Concentrate on strengths and talents • Accept the child’s limitations • Be consistent with discipline, school, and behaviors… • Use positive reinforcement • Closely supervise and be a good role model! • Honor the person’s feelings • REPEAT, REPEAT, REPEAT!

45. FASD Strategies for Working with Individuals Who Have a FASD • For teenagers: • Focus education on job training and daily living skills • Closely monitor and supervise • Moderately increase responsibilities • Provide clear guidance/rules about behavior • Provide sex education • Provide appropriate/safe recreational activities

46. FASD Strategies for Working with Individuals Who Have a FASD • Discipline: • Traditional behavioral interventions typically don’t work • Consider whether the behaviors reflect neurological differences • Consider the environment • Invite the person into to the discussion and try to identify “stuck points”

47. FASD Key Words to Remember • Concrete • Consistent • Repetition • Routine • Simplicity • Specific • Structure • Supervision

48. FASD For More Information • Fetal Alcohol Spectrum Disorders: Trying Differently Rather Than Harder, by Diane Malbin, MSW. Available at www.FASCETS.org. • Fetal Alcohol Syndrome: A Parents Guide to Caring for a Child Diagnosed with FAS, by Leslie Evans, MS, et al. Available for download at http://otispregnancy.org/pdf/FAS_booklet.pdf • Fetal Alcohol Syndrome, Fetal Alcohol Effects: Strategies for Professionals, by Diane Malbin, MSW. Hazelden Foundation, Center City, MN. • Fetal Alcohol Syndrome: Practical Suggestions and Support for Families and Caregivers, by Kathleen Tavenner Mitchell, MHS, LCADC, and the National Organization on Fetal Alcohol Syndrome. Available at http://www.nofas.org/estore

49. FASD References • Alan Guttmacher Institute. Facts on American teens’ sexual and reproductive health. www.guttmacher.org/pubs/fb_ATSRH.htm • The Centers for Disease Control and Prevention. Fetal alcohol spectrum disorders. www.cdc.gov/ncbddd/fas/fasprev.htm • Day NL and Richardson GA. 2004. An analysis of the effects of prenatal alcohol exposure on growth: A teratologic model. American Journal of Medical Genetics Part C. 127C:28-34. • Eustace LW, et al. 2003. Fetal alcohol syndrome: A growing concern for healthcare professionals. Journal of Obstetric, Gynecologic, and Neonatal Nursing. 32:215-221. • The Institute of Medicine. 1996 Report on FAS. http://www.come-over-.to/FAS/ IOMsummary.htm • Lupton C, et al. 2004. Cost of fetal alcohol spectrum disorders. American Journal of Medical Genetics Part C. 127C:242-50. • Mattson SN, et al. Teratogenic effects of alcohol on brain and behavior. National Institute on Alcohol Abuse and Alcoholism. http://pubs.niaaa.nih.gov/publications/ arh25-3/185-191.htm • Spadoni AD, et al. 2007. Neuroimaging and fetal alcohol spectrum disorders. Neuroscience and Biobehavioral Reviews 31:239-245. • Streissguth AP, et al. 1991. Fetal alcohol syndrome in adolescents and adults. Journal of the American Medical Association. 265(15):1961-7. • Streissguth AP, et al. 2004. Risk factors for adverse life outcomes in fetal alcohol sydnrome and fetal alcohol effects. Developmental and Behavioral Pediatrics 25(4):228-238. • Substance Abuse and Mental Health Services Administration Fact Sheets. http://www.fasdcenter.samhsa.gov/grabGo/factSheets.cfm

50. FASD Helpful Websites • National Organization on Fetal Alcohol Syndrome- www.nofas.org • Fetal Alcohol Syndrome, Education and Training Services, Inc.- www.fascets.org • The FASD Center for Excellence, Substance Abuse and Mental Health Services Administration- www.fascenter.samhsa.gov • FASlink- http://www.acbr.com/fas/ • The Arc- http://www.thearc.org/fetalalcohol.html • The Centers for Disease Control and Prevention- http://www.cdc.gov/ncbddd/fas/default.htm