Fetal Alcohol Spectrum Disorders What Is It and What Should We Do? f or Public Health

1. Fetal Alcohol Spectrum DisordersWhat Is It and What Should We Do?for Public Health Carey Szetela, PhD 615 327-5909, cszetela@mmc.edu Meharry Medical College, FASDsoutheast.org Funding provided by the U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, Grant no. U84DD000882.

2. What non-prescription drug of abuse is most damaging to fetal brain development? Of all the substances of abuse (including cocaine, heroin and marijuana), alcohol produces by far the most serious neurobehavioral effects in the fetus* The most common preventable developmental disability *Institute of Medicine, Report on Fetal Alcohol Syndrome Diagnosis, Epidemiology, Prevention and Treatment, 1996.

3. What Every Woman Should Know About Alcohol and Pregnancy When a pregnant woman drinks alcohol, so does her unborn baby. Read the 5 things every woman should know about drinking alcohol during pregnancy. www.cdc.gov/Features/AlcoholFreePregnancy

4. Objectives • What is FASD? • Alcohol Use in Pregnancy • FASD Prevalence • Public Health Issues • Resources

5. Fetal Alcohol Syndrome (FAS) • A diagnosis with standardized criteria • Must meet thresholds for wide-ranging effects • Facial • Growth • Brain, CNS • Not always the most severely affected

6. What are Fetal Alcohol Spectrum Disorders? • Range of effects that can occur in a person whose mother drank alcohol during pregnancy – can be mild to severe • Physical • Mental, Learning Disabilities • Behavioral • FASD is not a Diagnosis • Includes FAS Bertrand J, Floyd RL, Weber MK. Guidelines for Identifying and Referring Persons with Fetal Alcohol Syndrome. Morbidity and Mortality Weekly Review. October 28, 2005 / 54;1-10.

7. Alcohol Risk in Pregnancy: No Known Safe Amount, No Safe Time, No Safe Kind Brain Nerves Brain Stomach Placenta Fetus Breast Heart Organs Liver Muscles Kidneys

8. Percentages of Past Month Alcohol Use among Women Aged 15 to 44, by Pregnancy Status: 2002 and 2003 Binge drinking defined as 5 or more drinks on one or more occasions in the last 30 days. Heavy alcohol use defined as 5 or more drinks on 5 or more occasions in last 30 days. -National Survey on Drug Use and Health. The NSDUH Report. Substance Use During Pregnancy: 2002 and 2003 Update. June 2, 2005 (SAMHSA).

9. CDC studies estimate FAS at 0.2 to 1.5 per 1000 live births higher prevalence in specific subpopulations FASD w/o full FAS features has higher prevalence Other studies estimate FASDs at 1/100 live births FASD is often unrecognized FASD Prevalence

10. What Public Health Issues Do We See? Perceptions about Alcohol and Pregnancy • Alcohol Use, Risk • Pregnancy, Risk Support for Children/Adults and their Families • FASD Screening and Access to Care • Need Evidence Based Best Practices Justice Issues • Response to Unlawful Acts by Persons w. FASD • Response to Misuse of Alcohol in Pregnancy

11. Perceptions about Alcohol and Pregnancy • Alcohol Use • Pregnancy • Taboos

12. Perceptions about Alcohol-Related and Other Risks to Pregnancies • Discuss attitudes towards pregnant women who pose behavioral risks to the fetus • Smoking, Rx or Illegal Drugs, Alcohol • Not wearing a seat belt • Health conditions that pose risk (diabetes) • Assisted reproductive technologies (increased rates of multiple births) • Others • Are there taboos that interfere with discussing these risks?

13. Cocaine / Other Drug Use in Pregnancy JAMA Publication, Medline Review of 36 articles Among children aged 6 years or younger, there is no convincing evidence that prenatal cocaine exposure is associated with developmental toxic effects that are different in severity, scope, or kind from the sequelae of multiple other risk factors. Many findings once thought to be specific effects of in utero cocaine exposure are correlated with other factors, including prenatal exposure to tobacco, marijuana, or alcohol, and the quality of the child’s environment. Prenatal care and drug tx… have been shown to optimize infant outcome. DA Frank, M Augustyn, W Grant Knight, T Pell, B Zuckerman. Growth, development, and behavior in early childhood following prenatal cocaine exposure. JAMA 2001:285:1613-25.

14. Do Health Providers Look for Alcohol Risks to Women’s / Fetal Health? • What counsel do they offer pregnant women? • What kinds of alcohol screening are effective? • What screening strategies enhance honest answers to alcohol screening questions? • What should health providers do if a woman receives an “at-risk” or greater risk screen for alcohol use? • If not pregnant, and if pregnant

15. Tough Conversationsfor Health Providers Some lament, “We don’t know how to do it.”

16. Effective Prevention Messages ? Szetela / Hayes FASDsoutheast.org

17. Support for FASD-Affected Children/Adults and their Families • Identifying the FASD-affected person • Access to Care • Best Practices • Need for Research

18. An Invisible Disability • IQ higher than functional intelligence • Verbal skills relatively high • Verbalize more than understand • Areas of higher brain function allow person to mask areas of deficit • Social expectations are higher than ability • Do not want to appear stupid • Family dysfunction may supply wrong primary explanation • Mislabeled: ‘Stupid’, ‘lazy’, ‘defiant’

19. Recognizing FASD: Childhood and Adulthood (Show pictures of affected people and discuss what it takes for someone to be identified (or not) as having an FASD)

20. Executive Functioning Ability to maintain a problem solving set to attain a future goal • Requires planning, mental representation and inhibition Deficits may include: • inadequate organization, planning, or strategy use • difficulty grasping cause and effect (consequences) • impaired judgment • concrete thinking (“take a cab home” = steal a cab) • lack of inhibition and ability to delay gratification • difficulty following multistep directions • inability to apply knowledge to new situations (difficulty breaking routines) J Bertrand, RL Floyd, MK Weber. Guidelines for Identifying and Referring Persons with Fetal Alcohol Syndrome. MMWR 2005

21. Personal Failings?... [Re a meeting with teachers following Adam’s delayed entry to high school] “We listened to a recital of Adam’s failures, shortcomings, recalcitrance. He continually forgot the combination for his locker, he touched other students “inappropriately,” he was perpetually late to class, he ate his lunch b/f arriving at school, he could not stay in his seat…. Yet he had the ability, each teacher stressed– he simply didn’t choose to use it.” • from Michael Dorris, adoptive father of child with FASD. From The Broken Cord, • Harper and Row, 1989. p. 129.

22. …or Brain Disorder? [of our 17 year old son, “Adam”] “He takes something that doesn’t belong to him, or he gets goaded into going to his boss and saying cuss words he doesn’t understand. Try to explain to that man how bad judgment is not a matter of simple intelligence or an indicator of a rotten person, but just inability, absolute inability.” • from Michael Dorris, adoptive father of child with FASD. From The Broken Cord, • Harper and Row, 1989. p. 217.

23. Caregiver Survey: People Aged 6-51 with FASD* • 94% ages 6–51 mental health problems • 23% mental illness requiring inpatient care • 83% experienced dependent living (adults) • 79% have employment problems (adults) Among age 12+ • 60% have trouble with the law • 49% repeated inappropriate sexual behavior • 61% disrupted school experience (ie drop out) • 35% have alcohol / drug probs Ann Streissguth *[Not a representative sample of persons with FASDs.] Streissguth, AP, Bookstein, FL, Barr HM, et al. Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. Develop Behav Peds 2004. 25:228-238.

24. CAPTA* 2010: Newborns with FASD • Modifies earlier CAPTA language that mandates healthcare providers to identify and make “appropriate referrals” to CPS for newborns affected by prenatal drug exposure, and to develop service “plans for safe care” of the child • Newly added category: newborns diagnosed with a fetal alcohol spectrum disorder (FASD) • Expected outcome is that more newborns will be referred to state CPS programs • However FASD is considered difficult to identify in the neonate […Not intended to have states make prenatal alcohol or drug exposure a category of child abuse or neglect or to make those children subjects of mandatory reporting laws. Congress carefully chose the word “referral” to avoid that. Rather, the goal is to address the safety and well-being of these children.] *Child Abuse Prevention and Treatment Act From ABA, http://apps.americanbar.org/litigation/committees/childrights/content/articles/010311-capta-reauthorization.html

25. AAP* Call to Action 2010 • Pediatricians should consider FASDs when evaluating children with developmental problems, behavioral concerns, or school failures • Children with FASD need a pediatric medical home to provide and coordinate care and ensure necessary medical, behavioral, social, and educational services *American Academy of Pediatrics

26. How to Initiate Evaluation • Inquire about history of maternal alcohol use in pregnancy. If present or unknown: • Refer to: child developmental specialist, geneticist, dysmorphologist, psychiatrist, or FASD clinic • Diagnosis involves multidisciplinary team: Medical, Psychological, Social • Sensitive Communication to affected person, mother, family

27. Evaluations may be absent or inconclusive: Treat “as if” they have FASD If No Conclusive Evaluation…

28. Need for Research on Best Practices Align expectations with abilities • Highly structured environment and expectations • KISS, One step at a time (Keep It Super Simple) • Concrete language • Frequent reminders/prompts • Repetition, Reinforcement, Role Play • Mentoring • Appropriate medical management and medications • Flexibility with behavior violations (no expulsions) • Logical, immediate reward/correction systems • Advocacy, team support, recognize strengths too! SAMHSA, FASD Curriculum for Addiction Professionals, Level One and Two, and Tools for Success Curriculum: Working with Youth and FASD in the Juvenile Justice System: www.samhsa.gov.

29. Justice Issues • The Justice Offender with FASD • The Alcohol Misusing Pre-pregnancy or Pregnant Woman

30. Caregiver Survey:FASD and Trouble with the Law • 14% of children • 60% of adolescents and adults • shoplifting / theft (36%) • assault (17%) • burglary (15%) • domestic violence (15%) • 12 years and older: 35% ever incarcerated

31. Caregiver Survey: Inappropriate Sexual Behavior …. Defined as repeated behaviors Difficulty with concept of physical boundaries • standing too close, touching, shows of “affection” • Children: 39% • Age 12 + adults: 49% • Similar prevalence male and female • Promiscuity, Exposing Self, Inappropriate Advances, Statutory rape (consensual) • Non-consensual sexual offenses, usually with victims in the age range of 5-10

32. “Lying” vs. “Confabulation” • Confabulation without ill-intent • Gaps in memory and understanding • May routinely fabricate info to fill these gaps • Trouble distinguishing fantasy from reality, TV shows from reality • So, confabulation as a life skill to help them meet expectations to ‘make sense’

33. Prevalence of FASD in Corrections Settings In response to a Q’airre to corrections systems, of the 3mil+ offenders represented, only 1 was reported to have a diagnosis of FAS* Nearly all affected people are undiagnosed in corrections systems** *Burd, Selfridge, Klug, Sakko. FAS in the US corrections system. 2003. **Burd, Fast, Conry, Williams. Fetal Alcohol Spectrum Disorder as a marker for increased risk of involvement with correction systems. J Psych and Law. 2010.

34. FASD Prevalence Estimates in Correctional Systems: … Review* • 6 of 54 studies met eligibility for review • Prevalence ranges from: • Highest: 23 per 100 (in Youth Psych Svcs Inpt Assess Unit) to • Lowest: 1 per 100 (a theoretical lowest prevalence extrapolated from general pop prevalence) • Mid: 3 studies average rate of about 10 per 100 *Popova S et al. Fetal Alcohol Spectrum Disorder Prevalence Estimates in Correctional Systems: A Systematic Literature Review. Can J Public Health. 2011.

35. Correx Prevalence Review Con’t • “The studies… to date lacked rigour, used different methodologies, and had small sample sizes, and therefore might not be generalizable.” • “Precise evaluations are not yet feasible since there are no widely used screening and diagnostic tools to identify the number of FAD-affected persons within the justice system. However, some progress has been made….”

36. Execution on Oct 26, 2010 NPR Oct 27 The judge who sentenced Landrigan to death has testified she would not have imposed the death penalty had Landrigan's lawyer presented doctors' reports and evaluations that showed, at the time of trial in 1990, that Landrigan suffered from fetal alcohol syndrome and brain injuries. NPR: Supreme Court OKs Foreign Lethal Injection Drug This undated photo shows Jeffrey  Landrigan, who was executed by Arizona on Tuesday after a U.S. Supreme Court decision lifted a stay on his execution. http://www.npr.org/templ ates/story/story.php?storyId=130866280.

37. Judicial Penalties for Alcohol Abuse in Pregnancy ??

38. The best way for society to deal with an identified pregnant at-risk drinker is: A. Counsel against drinking and recommend voluntary treatment programs B. Restrain her from drinking with a mandatory treatment program C. Restrain her from drinking with incarceration D. All of the above E. Other

39. ACOG Opinion 321, 2005 Six Objections to Punitive and Coercive Legal Approaches to Maternal Decision Making Maternal decision making, ethics, and the law. ACOG Committee Opinion No. 321. ACOG. Obstet Gynecol 2005;106:1127-37.

40. 1. Coercive and punitive legal approaches to pregnant women who refuse medical advice fail to recognize that all competent adults are entitled to informed consent and bodily integrity. A fundamental tenet of contemporary medical ethics is the requirement for informed consent, including the right of competent adults to refuse medical intervention. In the United States, even in the case of two completely separate individuals, constitutional law and common law have historically recognized the rights of all adults, pregnant or not, to informed consent and bodily integrity, regardless of the impact of that person’s decision on others.

41. 2. Court-ordered interventions in cases of informed refusal, as well as punishment of PG women for their behavior that may put a fetus at risk, neglect the fact that medical knowledge and predictions of outcomes in obstetrics have limitations. Women almost always are best situated to understand the importance of risks and benefits in the context of their own values, circumstances, and concerns. Fallibility – present to various degrees in all medical encounters – is sufficiently high in obstetric decision making to warrant wariness in imposing legal coercion.

42. 3. Coercive and punitive policies treat medical problems such as addiction and psychiatric illness as if they were moral failings. Although once considered a sign of moral weakness, addiction is now, according to evidence-based medicine, considered a disease – a compulsive disorder requiring medical attention. Studies overwhelmingly show that pregnant drug users are very concerned about the consequences of their drug use for their fetuses and are particularly eager to obtain treatment once they find out they are pregnant.

43. 4. Coercive and punitive policies are potentially counterproductive in that they are likely to discourage prenatal care and successful treatment, adversely affect infant mortality rates, and undermine the physician-patient relationship Various studies have suggested that attempts to criminalize pregnant women’s behavior discourage women from seeking prenatal care. Threats and incarceration have been ineffective in reducing the incidence of alcohol and drug abuse among pregnant women, and removing children from the home of an addicted mother may subject them to worse risks in the foster care system.

44. 5. Coercive and punitive policies directed toward pregnant women unjustly single out the most vulnerable women. Decisions about detection and management of substance abuse in pregnancy are fraught with bias, unfairly burdening the most vulnerable despite the fact that addiction occurs consistently across race and socioeconomic status. In the landmark case of Ferguson v City of Charleston, which involved selective screening and arrest of pregnant women who tested positive for drugs, 29 of 30 women arrested were African American.

45. 6. Coercive and punitive policies create the potential for criminalization of many types of otherwise legal maternal behavior Because many maternal behaviors are associated with adverse pregnancy outcome, these policies could result in a society in which simply being a woman of reproductive potential could put an individual at risk for criminal prosecution. (i.e., poorly controlled diabetes, periconceptional folic acid deficiency, obesity, and prenatal exposure to certain medications)

46. What Can You Do? • Know Local Policies, Laws • Educate • Self: Know risks, screening, tx options • Families: Respectful Prevention Messages, Tx • Society: Raise and discuss issues • Promote alcohol / drug screening • Avoid ‘just an occasional drink’ in PG • Recognize own biases • Listen, Empathize

47. Information and Treatment Resources • Southeastern Regional FASD Training Center Tel: 615 327-5525 Web: www.sefasrtc.org • NOFAS (National Organization on FAS) Phone: 202-785-4585 Web: www.nofas.org • Local Alcohol and Drug Treatment Resources: Web: http://findtreatment.samhsa.gov/facilitylocatordoc.htm • CDC FAS Home Page at www.cdc.gov/fasd

48. Questions, Comments ?? Thank you!