FASD Overview for Individuals New to the Field

1. FASD Overview for Individuals New to the Field Building FASD State Systems Meeting Albuquerque NM May 12-14, 2009

2. Dan Dubovsky, MSWFASD SpecialistSAMHSA FASD Center for Excellence 2101 Gaither Rd., Ste 600 Rockville, MD 20850 301-527-6567 dan.dubovsky@ngc.com www.fasdcenter.samhsa.gov 1-866-STOPFAS (866-786-7327)

3. Fetal Alcohol Spectrum Disorders (FASD) • FASD is a spectrum of disorders • There is a wide range of intellectual capabilities in individuals with FASD • There is a wide range of disabilities due to prenatal alcohol exposure, from mild to severe • There is no way to predict how much alcohol will cause how much damage in any individual • There are many different ways that the disabilities of FASD are manifested • FASD is a descriptive term, not a diagnosis

4. Fetal Alcohol Spectrum Disorders (FASD) • Behavior often appears to be purposeful • Typical approaches to “difficult” behaviors often don’t work • Many individuals with FASD have other difficulties • One cannot categorically say that all behavior is due to FASD • Fetal alcohol spectrum disorders are brain based disorders • As such, we can begin to understand why individuals with an FASD may have some of the difficulties they exhibit

5. Diagnostic Terminology Pregnancy Alcohol • Fetal alcohol Syndrome (FAS) • Alcohol-related neurodevelopmental disorder (ARND) • Partial FAS (pFAS) + May result in

6. Other Terminology Used • Fetal alcohol effects (FAE) • Alcohol related birth defects (ARBD) • Static encephalopathy (SE)

8. FASD: What Do We Know • Leading known cause of preventable mental retardation • The majority of individuals with FASD do not have mental retardation • 100% preventable • Fetal alcohol spectrum disorders can occur in any community where women drink • Women do not set out to harm their children • People with an FASD are in every system of care • Not a new disorder

9. Historical Recognition of the Effects of Prenatal Alcohol Use “Behold, thou shalt conceive and bear a son…and now drink no wine nor strong drink” -Judges 13:7

10. Historical Recognition of the Effects of Prenatal Alcohol Use “If offspring should unfortunately be derived from such a [alcoholic] parentage, can we doubt that it must be diseased and puny in its corporeal parts; and beneath the standard of a rational being in its intellectual facilities?” -Thomas Trotter 1813

11. Historical Recognition of the Effects of Prenatal Alcohol Use “Maternal inebriety is a condition peculiarly unfavourable to the vitality and to the normal development of the offspring. Its gravity in this respect is considerably greater than that of paternal alcoholism.” -William Sullivan 1899

12. FASD: What Do We Know • Caused by the effects of alcohol on the developing fetus • Alcohol is a teratogen • A substance that might interfere with the normal development of a fetus • Alcohol is the strongest teratogen that is generally used and it is used more frequently than any other

13. Benefits of Preventing FASD • FASD is a birth defect that is 100% preventable • If no woman consumed any alcohol during her entire pregnancy, no child would be born with an FASD • It is very costly to raise a person with an FASD • Estimates by Lupton, Harwood, et al are that it costs $2,000,000.00 over a lifetime to care for one individual with FAS • There are no estimates for the overall costs of care for FASD

14. Importance of Preventing FASD: Facts to Consider • FASD is one of the few birth defects that is 100% preventable • There is no known safe amount of alcohol to use during pregnancy • There is no known safe time to drink during pregnancy • Most women do not know when they become pregnant • The only proven safe amount of alcohol to drink during pregnancy is none • Fetal alcohol spectrum disorders can occur in any community where women drink

15. Who is at Risk of Giving Birth to a Child with an FASD? • Women with co-occurring disorders • Families with a history of multigenerational alcohol use • Women who have experienced stressors that increase the risk of alcohol use or abuse • Women who have an FASD • Women who have given birth to a child with an FASD • The highest risk group • All women of childbearing age who drink

16. Alcohol and Women • All alcoholic beverages are harmful to the fetus. It does not matter what form the alcohol comes in • E.g., wine spritzers, alcohol pops, beer, wine, mixed drinks • A drink  a drink  a drink • All beer and wine do not have the same alcohol content • a typical drink is often more than a standard drink • Kaskutas and Graves (2001) studied alcohol consumption in 321 pregnant women • When self selecting drinks, their estimated drink size was up to 307% greater than standard measures

17. Prevention Messages • There is no known safe amount of alcohol to use during pregnancy • There is no known safe time to drink during pregnancy • The only proven safe amount of alcohol to drink during pregnancy is none • Fetal alcohol spectrum disorders can occur in any community where women drink

18. Incidence • Incidence in the general population of an FASD is thought to be about 1 in 100 in the U.S. • With better incidence studies, we will most likely find a higher incidence of FASD • A recent study in Italy found an incidence of between 1 in 25 and 1 in 50 in first grade children • This study is being replicated in the U.S.

19. Why We Might Miss an FASD in a Family Member • Our focus is on their children • We give them a list of instructions or tell them what they need to do • Multiple instructions is difficult for someone with an FASD • We ask if they understand and if they have any questions • They reply that they understand and have no questions • They say that they know what they need to do and we take that at face value • If there is an FASD, later they may not recall what they need to do or what the instructions mean

20. Language Issues in FASD • Often verbal and therefore appear to be intact • Very literal in their thinking and interpretation • Verbal receptive language is more impaired than verbal expressive language • A person with an FASD may be able to talk a good game but not be able to process or use all of what they hear • They will often do what they think they need to based on the pieces that they have processed • This frequently looks like purposeful oppositional or uncooperative behavior • Verbal receptive language is the basis of most of our interactions with people

21. Situations That Rely on Verbal Receptive Language Processing • Parenting techniques • Elementary and secondary education • Child welfare • Judicial system • Treatment • Motivational interviewing • Cognitive behavioral therapy • Group therapy • AA/NA groups • Awareness campaigns

22. Typical Difficulties for Individuals With an FASD • Difficulty remembering, understanding, and following multiple directions or rules • Appear to be oppositional because they do not complete tasks/chores

24. Typical Difficulties for Individuals With an FASD • Difficulty anticipating the consequences of their words or actions • Difficulty determining what to do in a given situation • No filtering mechanism between what they think and what they say • Social communication issues

25. A Strengths Based Approach to Improving Outcomes • Identify strengths and desires in the individual • What do they do well? • What do they like to do? • What are their best qualities? • What are your funniest experiences with them? • Identify strengths in the family • Identify strengths in the providers • Identify strengths in the community • Include cultural strengths in the community

26. Friendly Likeable Verbal Helpful Caring Hard worker Determined Have points of insight Good with younger children* Not malicious Every day is a new day Strengths of Persons With an FASD D. Dubovsky, Drexel University College of Medicine (1999)

27. How Outcomes Can Be Improved by Recognizing FASD • The individual can be recognized as having a disability • Recognizing and providing appropriate interventions for women with an FASD is a key prevention approach • Providing proper support for family members with an FASD can reduce out of home placements • Frustration and anger of providers and families can be reduced by seeing behavior as due to brain damage • We can ask the right questions in the right way • Diagnoses can be questioned

28. How Outcomes Can Be Improved by Recognizing FASD • Multiple admissions for treatment can be reduced • Approaches can be modified to improve outcomes • Long term success can be increased by providing the proper transition and supports • The quality of life for the individual with an FASD, the family, and the community can be dramatically improved • The sense of accomplishment by providers and systems can be increased resulting in a more positive attitude

29. “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 Paradigm Shift

30. Person First Language • “He’s a child with FAS” not “he’s an FAS kid” • A person affected by prenatal alcohol exposure, not “the affected person” • A mother with FAS, not “an FAS mom” • “She has mental retardation” not “she is mentally retarded” • “He has a mental illness” not “he is mentally ill” • “He has schizophrenia” not “he is a schizophrenic” • No one “is” FAS although a person may have FAS

31. Final Thoughts to Keep in Mind • Flexibility and creativity are essential in addressing FASD • Identifying and supporting strengths and validating accomplishments is essential • Our goal is to help people succeed • Positive outcomes for the person means positive outcomes for agencies and systems • We want people to become interdependent • They need a sense of safety in order to do that • Ask “what does this person need in order to succeed and how can we provide that for him or her”

32. Final Thoughts to Keep in Mind • The spectrum of FASD are much more common than many other disorders such as Autism • The incidence in systems of care is significantly higher • Most individuals with an FASD will not be diagnosed • Correctly recognizing and addressing FASD (in terms of prevention and treatment) can reduce long term costs • It costs a minimum of $2 million to raise one individual with FAS • Correctly identifying and addressing FASD can improve outcomes for individuals, families, agencies, and systems

33. Final Thoughts to Keep in Mind • Identification of women at risk who may have an FASD and providing successful interventions for them is a key prevention intervention • It is impossible to work successfully in almost any setting without having a firm working knowledge of FASD • This is especially true in our systems of care • FASD is a human issue

34. FASD Is a Human Issue • FASD is about people; do not lose sight of that • FASD affects the lives of individuals, families, and communities • It’s essential to “really care” • People with an FASD and their families have great potential • Always remember that addressing FASD can be a matter of life or death • What you do concerning this issue can save lives! • Remember the starfish story