Preventing Fetal Alcohol Spectrum Disorders in Indiana

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 High School Social Science Classes.

2. FASD Indiana FASD Prevention Taskforce Fetal Alcohol Spectrum DisordersWhy a person should NOT drink alcohol if she COULD get pregnant!

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 U.S. in 1973 by Jones and Smith, who coined the term “fetal alcohol syndrome” • As of 1989, all alcohol beverages sold in the U.S. 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… • Approximately 11,000 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 The Prevalence of 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 Eustace LW 2003; Substance Abuse and Mental Health Services Administration; and the Centers for Disease Control and Prevention

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 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 FASD Facial Features: Smooth Philtrum and Thin Upper Lip Smooth philtrum (little to no groove above upper lip) Thin upper lip 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: Short Palpebral Fissures (Eye Openings) Eyes are measured from the outer corner to the inner corner

17. 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

18. 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

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

20. 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

21. 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

22. Malbin, 2002

23. 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

24. 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/

25. Secondary Disabilities www.fasdcenter.samhsa.gov; Streissguth AP, et al. 2004

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

27. 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

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

29. 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

30. 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 • University of South Dakota. Fetal Alcohol Syndrome Handbook http://www.usd.edu/cd/publications/ • fashandbook.pdf

31. 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

32. FASD Indiana Resources • The Fetal Alcohol Syndrome Center of Indiana - Indiana University Medial Center 975 West Walnut Street, IB 130 Indianapolis, IN 46202 Phone: 317-274-2450  Fax: 317-274-2387   Provides diagnosis, education and patient advocacy for those affected with prenatal alcohol exposure. • CNS - Center for Neurobehavioral Sciences 3010 E. State Ft. Wayne, IN 46805 Phone: 260-471-2300  Toll Free: 1-800-901-8416 Provides therapy, education and patient advocacy for those affected with prenatal alcohol exposure. Organizes a support group for parents and caregivers (and other interested parties) of those with a FASD.

33. FASD Indiana Resources • Indiana Department of Health - IN Perinatal Network (IPN), Prenatal Substance Use Prevention Program (PSUPP) 2 N Meridian Street; Indianapolis, IN 46204 Phone: 317-233-1269 Fax: 317-233-1300 Referrals and early intervention for substance-using pregnant women. Training for professionals. • Indiana Protection and Advocacy Services 4701 N Keystone Avenue, Suite 222, Indianapolis, IN 46205 Phone: 800-622-4845 or 317-722-5555       Fax: 317-722-5564 Statewide agency for persons with developmental disabilities.www.in.gov/ipas

34. www.health.state.mn.us/fas/catalog

35. Slides developed by: Lisa J. Spock, Ph.D., C.G.C. Gordon Mendenhall, Ed.D. Assisted by: David D. Weaver, M.D. Becky Kennedy, M.Ed. James M. Ignaut, M.A., M.P.H., C.H.E.S. Supported by: Indiana University School of Medicine Indiana State Department of Health Indiana Department of Education University of Indianapolis