Fetal Alcohol Spectrum Disorder (FASD)

1. Fetal Alcohol Spectrum Disorder(FASD) Christy Hicks, MSW

5. What Are We Talking About? • Fetal Alcohol Syndrome (FAS) • Fetal Alcohol Effects (FAE) • Alcohol-Related Birth Defects (ARBD) • Alcohol-Related Neurodevelopment Disorder (ARND) • All of the Above = Fetal Alcohol Spectrum Disorder (FASD)

6. What is FASD? • Facial abnormalities? Sometimes • Mental retardation? Sometimes • Brain dysfunction? ALWAYS

7. What Does FASD Have To Do With Me? • FASD does not mean a “shaky baby.” • FASD does not mean a baby “born drunk.” • FASD means permanent changes in the brain that affects every aspect of life, including the people who come into contact with the affected individual. (Job Corps Students)

8. On any given day in the United States,10,657 babies are born 1 of these babies is HIV positive 4 of these babies are born with Spina Bifida 10 of these babies are born with Down Syndrome 120 of these babies are born with Fetal Alcohol Spectrum Disorder

9. Why Focus on Alcohol in Job Corps? • Institute of Medicine: Of all the substances of abuse, including heroin, cocaine, and marijuana, alcohol produces by far the most serious neurobehavioral effects in the fetus, resulting in life-long permanent disorders of memory function, impulse control and judgment. • National Institute of Alcohol Abuse and Alcoholism: Fetal Alcohol Syndrome (FAS) is the leading known cause of mental retardation in western civilization. • Center for Disease Control: Although many individuals with FAS have mental retardation, most individuals with FAS have an IQ in the normal range.

10. National Institute on Alcohol Abuse and Alcoholism: Persons with FAS have serious problems with attention deficits, impulse control, judgment, and memory. Although many of the physical characteristics associated with FAS become less prominent after puberty, behavioral and emotional problems become more pronounced. Fetal Alcohol Spectrum Disorder is a lifespan issue. Children with FASD grow into adults with FASD.

11. Kentucky: Prevalence of FASD (Figures based on national prevalence data) • Total Population: 3,960,020 • Number of live births: 54,492 • # of FASD born per year: 543 • # of total FASD: 39,603 • # FASD under 18 years old: 11,880 • # FASD 19 and older: 27,720 • # FASD & Mental Retardation: 5,702 • # FASD & Congenital Heart Defects: 18,873 • # FASD & Epilepsy: 2,375 • # FASD & ADHD: 15,840

12. Data • # FASD & Speech / Language Disorders: 32,867 • # FASD & Hearing Loss / Deafness: 11,087 • # children with FASD in Foster Care system: 9,503 • # FASD & Mental Illness: 27,720 • Annual costs for Special Education and Juvenile Justice for FASD (children age 5 – 18): $19,958,400 • Total annual costs for FASD: $104,346,426 • Cost per day for FASD: $231,200 • Five year costs for FASD: $421,940,130

13. Practically speaking, what does “brain dysfunction” mean? • Characteristic behaviors of an individual with FASD that can affect JCC Students include: • Difficulty understanding abstract concepts in more than a superficial way. • Difficulty understanding cause and effect. • Inability to generalize information from one setting to another. • Inconsistent memory & inconsistent performance. • Poor judgment.

14. FASD and the School System • MYTH: Children with FASD have mental retardation. If there is a child with FASD at my school, he would be in a special education class, receiving extra resources and support. • FACT: Children with FASD can have an average or high IQ and may look just like the rest of the students in his class. • Children with FASD are often considered “bad” “lazy” “unmotivated” “defiant” “spoiled” “just don’t care” “out of control” • Teachers, counselors and classmates become increasingly frustrated with this child who “refuses to cooperate.”

15. FASD and the Foster Care System • MYTH: Children with difficult behavior can be “loved” out of behavioral problems. All behavior stems from trauma and abuse, and can be overcome. The right family will make the difference. • FACT: Organic brain dysfunction cannot be changed. Statistically, children in foster care are the group most likely to have been prenatally exposed to alcohol. • Foster children with undiagnosed FASD usually experience multiple placements due to their extremely challenging behaviors. • Foster parents, siblings and social workers become increasingly frustrated by this “unmanageable child.”

16. What does it feel like to be a person with FASD?

17. What Does it Feel Like? • When the primary brain injury is never acknowledged and addressed, the child grows up believing he is “stupid” and “worthless.” • Secondary disabilities develop as a result of the failure to properly deal with the primary disability.

18. Issues Associated with FASD • 94% of individuals with FASD experienced mental health problems (depression, mental illness, suicide attempts) • 60% experienced trouble with the law (charged or convicted of a crime) • 60% experienced confinement in a rehab facility, psychiatric hospital or prison • 45% demonstrated inappropriate sexual behavior • 43% were expelled or drop out of school • 30% experienced severe problems with alcohol or other drugs

19. Remember…. Alcohol affects whatever is developing at the time that alcohol is consumed.

23. The Pweor of the Hmuan Mnid Aoccdrnig to raeserch at Cmabrigde Uinervtisy, it deosn’t mttaer in waht oredr the ltteers in a wrod are, the olny iprmoatnt tihng is taht the frist and lsat ltteer be in the rghit pclae. The rset can be a taotl mses and you can still raed it wouthit porbelm. This is bcuseae the huamn mnid deos not raed ervey lteter by istlef, but the wrod as a wlohe. Amzanig, huh?

24. Look Below and Say the COLOR, Not the Word YELLOW BLUEORANGE BLACKRED GREEN PURPLE YELLOWRED ORANGEGREENBLACK BLUE REDPURPLE GREEN BLUEORANGE LEFT / RIGHT BRAIN CONFLICT. Right Brain tries to say the color, but Left Brain wants to read the word!

26. How much alcohol does it take to cause damage? What kind of damage is caused by different amounts of alcohol? “Depending on the dose, timing and conditions of exposure, as well as on the individual characteristics of the mother and fetus, prenatal alcohol exposure can cause a range of disabling conditions.” --Dr. Ann Streissguth

27. Wayne State University(As published in 2001 Journal: Pediatrics) • The researchers found that children who had been exposed to ANY AMOUNT of prenatal alcohol had a much higher incidence (3.2 times higher) of aggressive and delinquent behavior. The effect was observed at average levels of exposure as low as one drink per week.

28. University of Washington • The researchers found that 7-year-old children who had been exposed to a “moderate” amount of alcohol (defined as two drinks on most days of pregnancy) had learning and behavior problems in the areas of attention, retention, cooperation, comprehension, impulsivity and organization, which were significantly different than the comparison group.

29. No one chooses to become addicted to alcohol or a drug. We must have a consistent message: Addiction is a disease, and many women need help to stop drinking.

30. It makes a difference how we respond.

31. Right now, how do our communities respond to mothers with addictions? (“Those women…..”) “She doesn’t deserve children.” “She’s weak / a failure / a loser” “She’s just trying to take advantage of the system.” “If she cared about her kids, she’d change.” “She deserves to be locked up.” “I stopped drinking on my own. If I can do it, so can she.” “If she loved Jesus more, she’d be able to stop.”

32. Punishing a child with FASD for behavior resulting from brain dysfunction is like punishing a child who is blind for bumping into the furniture.

33. Comparison Individuals with FASD have challenges with… …and yet the environment demands… rapid responses grouped by age remember after just one lesson abstract learning multiple transitions one timeline for everyone • slow cognitive pace • dysmaturity, acts younger than age • memory problems, often needs re-teaching • learn by doing • difficulty transitioning • need more time

34. Questions???