1. Fetal Alcohol Spectrum Disorders Presenter Sr. Suzette Fisher, SND, Ed.S. Prevention, Education, Intervention, and Advocacy Emerging Issues in Maternal and Child Health Audio-Conference September 21, 2006 3:00 – 4:30 p.m. (EST)

2. OVERVIEW OF FASD 1.Terminology associated with prenatal alcohol exposure 2.Cause and prevalence of FASD 3.Diagnostic criteria 4.Characteristics of FASD and implications for intervention 5.State and national initiatives

3. OVERVIEW OF FASD 1.Terminology associated with prenatal alcohol exposure 2.Cause and prevalence of FASD 3.Diagnostic criteria 4.Characteristics of FASD and implications for intervention 5.State and national initiatives

4. DEFINITIONS Fetal Alcohol Spectrum Disorders (FASD) Fetal Alcohol Syndrome (FAS) Fetal Alcohol Effect (FAE) Alcohol-Related Birth Defects (ARBD) Alcohol-Related Neurodevelopmental Disorder (ARND)

5. OVERVIEW OF FASD 1.Terminology associated with prenatal alcohol exposure 2.Cause and prevalence of FASD 3.Diagnostic criteria 4.Characteristics of FASD and implications for intervention 5.State and national initiatives

6. “Of all the substances of abuse, including heroin, cocaine, and marijuana, alcohol produces by far the most serious neurobehavioral effects in the fetus.” – Institute of Medicine Report to Congress (1996) “There is no known safe amount of alcohol consumption during pregnancy.” – Centers for Disease Control and Prevention, U.S. Surgeon General, American Academy of Pediatrics Alcohol consumption during pregnancy CAUSE OF FASD

7. CAUSE “Of all the substances of abuse, including heroin, cocaine, and marijuana, alcohol produces by far the most serious neurobehavioral effects in the fetus.” --Institute of Medicine Report to Congress (1996) FASD is 100% preventable! If you’re pregnant, don’t drink!

8. PREVALENCE Estimate: 1 in 100 individuals are affected by prenatal alcohol exposure.

9. OVERVIEW OF FASD 1.Terminology associated with prenatal alcohol exposure 2.Cause and prevalence of FASD 3.Diagnostic criteria 4.Characteristics of FASD and implications for intervention 5.State and national initiatives

10. 4-Digit diagnostic code  Created in 1997  Susan Astley, Ph.D. & Sterling Clarren, M.D.  256 codes  22 diagnostic names DIAGNOSTIC CRITERIA

11. DIAGNOSTIC FEATURES  Growth Deficiency  Dysmorphic facial features  CNS Damage  Prenatal alcohol exposure

12. DIAGNOSTIC FEATURE  Growth Deficiency Prenatal and/or postnatal height and/or weight below the 10 th percentile Physical anomolies Respiratory problems Heart problems Eye and ear defects Limb reduction Hutchinson’s teeth

13. DIAGNOSTIC FEATURE  Dysmorphic facial features of FAS Short palpebral fissures (<10 %ile) – short eye openings Thin vermilion border of upper lip Smooth philtrum

14. FACE OF ARND Discriminating Features None Associated Features None It’s not about the face, it’s about the BRAIN !

15. DIAGNOSTIC FEATURE  CNS Damage Damage to the brain Static encephalopathy – the damage to the brain is permanent and unchanging. This CNS dysfunction, or brain damage, has the greatest impact on learning and behavior.

16. DIAGNOSTIC FEATURES  Prenatal alcohol exposure Confirmed prenatal alcohol exposure

17. OVERVIEW OF FASD 1.Terminology associated with prenatal alcohol exposure 2.Cause and prevalence of FASD 3.Diagnostic criteria 4.Characteristics of FASD and implications for intervention 5.State and national initiatives

18. PRIMARY CHARACTERISTICS OF FASD Developmental delays Inconsistent performance Impulsivity Distractibility Attention deficits Disorganization Poor social skills Literal thinking Difficulty with abstractions Memory impairments Deficits in higher-level receptive & expressive language

19. PRIMARY CHARACTERISTICS OF FASD  Difficulty generalizing  Poor problem-solving ability  Difficulty with transitions  Processing deficits (visual, auditory, sensory)  Poor judgment  Difficulty understanding cause/effect  Impaired motor development  Able to repeat instructions, unable to put into action  Learning disabilities

20. PRIMARY CHARACTERISTICS OF FASD These characteristics vary among individuals with FASD. No single type of CNS damage or pattern of dysfunction has been identified that characterizes all children with FASD. – Streissguth, A. 1997. Fetal alcohol syndrome: A guide for families and communities.

21. SECONDARY CHARACTERISTICS  Mental health issues  Disrupted school experience  Trouble with the law  Inappropriate sexual behavior  Confinement in jail or treatment facilities  Alcohol and drug problems  Dependent living  Employment problems – Streissguth, AP (1996)

22. Look for Clues as to the underlying cause of the behavior. DEVELOPING EFFECTIVE STRATEGIES

23. INTERVENTIONS  Effective interventions: With early identification and diagnosis the proper supports can be put in place – at home, in school, at work – to improve outcomes for individuals with this disability. Website resources on the next slide provide suggestions for interventions. New studies are in process to develop effective interventions.  Parents, teachers, and other professionals need to learn to respond and work differently with individuals with FASD.  Early and effective interventions reduce the chances of dropping out of school, trouble with the law, mental health issues, alcohol and drug problems, housing and job issues – Streissguth, AP, Barr, HM; Kogan, J, Bookstein, FL,1996).

24. FASD ARE LIFELONG DISABILITIES

25. OVERVIEW OF FASD 1.Terminology associated with prenatal alcohol exposure 2.Cause and prevalence of FASD 3.Diagnostic criteria 4.Characteristics of FASD and implications for intervention 5.State and national initiatives

26. CURRENT EFFORTS Double ARC  Diagnosis  Parent support  Triumph classes  Project Adapt Ohio  FASD Town Hall Meeting  State FASD Conference  Federal subcontract for FASD systems change  Focus on awareness and prevention CDC  Curricula  Interventions  Diagnostic guidelines SAMHSA FASD Center for Excellence  20 local subcontracts  10 States  5 Juvenile Justice

27. PARENT & TEACHER SERIES Facilitator Training for Parent Series March 13 – 16, 2007

28. WEBSITES FOR FASD INFO www.doublearc.org www.cdc.gov/ncbddd/fas http://fascenter.samhsa.gov/ www.nofas.org www.notasingledrop.org www.ebasedacademy.org www.bced.gov.bc.ca/specialed/fas www.education.gov.ab.ca/fasd/

29. CONTACT INFORMATION Double ARC 3837 Secor Road Toledo, Ohio 43623 419-479-3060 www.doublearc.org