Fetal Alcohol Spectrum Disorder

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1 Fetal Alcohol Spectrum Disorder Amy Mack, LMSW Denise Wheatley, MA, FLE

2 In 1968: Paul Lemoine of France first described effects of prenatal alcohol exposure in the medical literature In 1973: U.S. researchers Drs. Jones and Smith and colleagues published a landmark report describing a pattern of birth defects in children born to women who had consumed alcohol during their pregnancy. The term FAS was introduced. In 1989: The book, The Broken Cord, brought public awareness about the dangers of prenatal alcohol exposure.

3 In 1981 and again in 2005 the Surgeon General issued this warning:

4 FAS: only the tip of the iceberg! Fetal Alcohol Spectrum Disorders (FASD) Fetal Alcohol Syndrome Alcohol-related Neurodevelopmental Disorder (ARND) ( mild-moderate FAS) Prenatal Exposure to Alcohol (clinically suspected to have FAS but appear physically normal ) Adaped from Streissguth

5 Fetal Alcohol Spectrum Disorders (FASDs) Individuals affected by prenatal alcohol exposure can have a range of serious, lifelong problems including physical, cognitive, behavioral, and social deficits. FASD: umbrella term describing range of effects that can result from prenatal alcohol exposure but not a diagnostic term.

6 Other Terminology o Fetal Alcohol Syndrome (FAS): Medical diagnosis, usually made by a dysmorphologist, clinical geneticist, or developmental pediatrician. o Prenatal Alcohol Exposure (PAE): Term used by some researchers to describe individuals with a confirmed history of prenatal alcohol exposure, who may or may not meet diagnostic criteria for an FASD. o Fetal Alcohol Effects (FAE): Term previously used to describe individuals who meet some, but not all of the diagnostic criteria for FAS.

7 FASD Introduction

8 Every day in the United States, more than 2,550 kids under age 16 have their first full drink of alcohol. 1

9 FALSE Every day in the United States more than 4750 kids under the age of 16 have their first full drink of alcohol.

10 50% of non-pregnant women aged years of age report some alcohol use

11 TRUE 50% of non-pregnant women aged years of age report some alcohol use

12 An episode of binge drinking for women of child bearing age is defined as 5 or more drinks per occasion

13 FALSE An episode of binge drinking for women of child bearing age is defined as 4 or more drinks per occasion

14 8% of pregnant women aged years in the US report alcohol use

15 FALSE 10% of pregnant women aged years in the US report alcohol use

16 2% of pregnant women ages years report frequent or binge drinking

17 TRUE 2% of pregnant women ages years report frequent or binge drinking

18 Youth who start drinking before the age of 15 are five times more likely to develop alcohol dependence or abuse in their lifetimes than those who begin drinking at age 21 years or later. 1

19 TRUE

20 Based on CDC studies, the prevalence of FAS in the US is estimated to be: 9.1 in 1,000 live births but may be closer to 50 per 1000

21 Sensible Drinking Limits Drinking < 3 drinks per day and < 7 drinks per week

22 Standard Drink Source: National Institute on Alcohol Abuse and Alcoholism. (2005a). Helping patients who drink too much: A clinician s guide, Updated 2005 Edition. NIH Pub. No Bethesda, MD: U.S. Department of Health and Human Services.

23 Standard Alcoholic Drink A standard drink is defined as.60 ounces of pure alcohol. Examples of a standard drink * include: 12 ounces of beer 12 ounces of wine cooler 5 ounces of wine 1.5 ounces of vodka (one shot) *3 oz of vodka is NOT a standard drink

Timing of an Exposure There are multiple critical periods associated with prenatal alcohol exposure: 1 st Trimester Drinking: risk for major morphological abnormalities, characteristic facial

24 Timing of an Exposure There are multiple critical periods associated with prenatal alcohol exposure: 1 st Trimester Drinking: risk for major morphological abnormalities, characteristic facial features, growth retardation, and neurological effects 2 nd Trimester Drinking: risk for spontaneous abortion, growth retardation, and neurological effects 3 rd Trimester Drinking: risk for growth retardation and neurological effects

26 Pregnant mom drinks alcohol. Her blood alcohol level rises. Alcohol crosses placenta. Fetus exposed to same blood alcohol levels but is unable to detoxify any of the alcohol before it reaches cells and organs.

27 Demonstration

30 Assessment of FAS: Lip-Philtrum guides Hoyme, H. E. et al. Pediatrics 2005;115:39-47

31 FAS Assessment: Measuring palpebral fissure length Chudley, A. E. et al. CMAJ 2005;172:S1-21S

32 and this! clinical examples of FAS: transcending race

33 Differential Diagnosis No feature of FAS is unique to prenatal alcohol exposure Many genetic conditions include growth retardation and/or CNS impairments Many environmental factors can lead to growth deficiencies and/ or CNS deficits (e.g. poor nutrition, abuse, neglect, depression, lead exposure) Other syndromes include constellation of facial features similar to FAS, including: Williams Syndrome Noonan Syndrome Dubowitz Syndrome Fetal Dilantin Syndrome

35 Mattson, et al., 1994; Mattson & Riley, 1995; Riley et al., 1995

36 Severe FAS Normal Brain 5-day old infants photo: Clarren, 1986

37 NORMAL

38 For a child with identified FAS, health costs are 9 times higher than for those kids who do not have an FASD. The lifetime cost for a person with FAS is estimated to be $2 million. The annual overall cost of FAS to the U.S. Healthcare system is around $6 billion.

39 Video Clip (Mothers Speak Out) 9:40-14:00 v=m7zfjcw9yco&ebc=anypxkpblyr8q 0t_Xc9- hsjtt6obvta6vdojsifzfdw1jqyqpopjul H6Mbk1UAzPBrLlXulWpuafsOr4jWSktrY WnzmlDLjBzw

40 Chronologic vs Developmental Age 5 Age 5 going on 2 goes to school takes naps follow 3 instructions follow1 instruction sit still for 20 minutes active, sit still for 5- interactive, cooperative 10 minutes play, share parallel play take turns my way or no way

41 Chronological vs Developmental Age 6 Age 6 going on 3 listen, pay attention for pay attention for about 1 hour 10 minutes read and write scribble line up on their own need to be shown and reminded wait their turn don t wait gracefully, act impulsively remember events require reminders about tasks and requests

42 Chronologic vs Developmental Age 10 Age 10 going on 6 read books without pictures beginning to read w/pictures learn from worksheets learn experientially answer abstract questions mirror & echo words structure their own recess get along and solve problems learn inferentially, academically behaviors require supervision & structured play learn from modeled problem- & socially solving/learn by doing know right from wrong developing sense of fairness have physical stamina easily fatigued by mental work

43 Chronologic vs Developmental Age 13 Age 13 going on 10 Act responsibly Need reminding Organize self, plan & Need visual cues & follow through modeling Meet deadlines after Complies with simple being told once/ follows expectations through Needs prompting Appropriate boundaries/ Kinesthetic, tactile, in your Understands body space space Establish/maintain friend- Forming early friendships ships

44 Chronologic vs Developmental Age going on 10 q On the verge of Needs structure & guidance Independence q Maintain a job & graduate Limited choice of activities Lives in the now(little ability to q Have a life plan project into the future q Relationships/safe sexual behaviors Giggles, curious, easily frustrated q Budget money Needs an allowance q Organize/accomplish task Needs to organized by adults at home, work and school

Interventions for People with FASD Diagnostic services are part of continuum of needed services for individuals and their families, including: Mental Health (psychologist, counselor) Medical

45 Interventions for People with FASD Diagnostic services are part of continuum of needed services for individuals and their families, including: Mental Health (psychologist, counselor) Medical (physician, PA, nurse, nurse practitioner, LPN) Case Management (social worker, case worker) Education/Special Education Occupational, Physical, Speech/Language Therapy Other Health and Allied Health Services Family Support and Respite Photo: Adult with FAS (used with permission of Teresa Kellerman/

47 Interpretations

48 What we see: Repeatedly making same mistakes What we think: Doing it on purpose/manipulative What s really going on: Can t link cause and affect Can t see similarities Can t generalize

49 What we see: Poor social judgment What we think: Poor parenting Abused child Doing it on purpose What s really going on: Not able to interpret social cues in environment. Does not know what to do in social situations

Threats of punishment Removal of privileges or possessions Physical punishment Behavioral plans or contracts Depends on memory and attention to motivators Green,

50 Threats of punishment Removal of privileges or possessions Physical punishment Behavioral plans or contracts Depends on memory and attention to motivators Green, J. (2007). Fetal alcohol spectrum disorders: Understanding the effects of prenatal alcohol exposure and supporting students. Journal of School Health, 77,

51 12:48 v=65zubanpyri&list=plifzcduldda4zmcio ygn4yhwwamjqtaa_&index=8

52 Developing Successful Interventions for Students with FAS by Deb Evensen and Jan Lutke

53 1. Concrete Talk in concrete terms, don t use words with double meanings, sarcasm, expressions, etc. 2. Consistency FAS kids do best in an environment with minimal changes, i.e. Teachers and parents can use the same words for key phrases and oral directions. 3. Repetition In order for something to make it to long term memory, it may simply need to be re-taught & re-taught & re-taught & retaught & retaught & retaught & retaught & retaught & retaught & retaught & retaught & retaught & retaught & retaught & retaught.. Dybdahl, C. & Ryan, S. (2009). Inclusion for students with fetal alcohol syndrome: Classroom teachers talk about practice. Preventing school failure, 53,

54 4. Routine Stable routines that don t change from day to day. FAS students need to know what to expect next. This decreases anxiety, enabling them to learn. 5. Simplicity Remember to Keep it Short and Sweet. A simple environment is the foundation for an effective school program. 6. Specific Say exactly what you mean. Tell them step by step what to do, developing appropriate habit patterns. Give gentle reminders to stay on task!

55 7. Structure Structure is the "glue" that makes the world make sense for a student with FAS. The world needs to provide the appropriate structure as a permanent foundation. 8. Supervision Because of their cognitive challenges, students with FAS bring an innocence to daily life situations. They need constant supervision, as with much younger children, to develop habit patterns of appropriate behavior. Give students plenty of time, encouragement and praise!

56 The Challenge of Fetal Alcohol Syndrome 181

57 When a intervention with a student is not working, then: Stop Action! Observe. Listen carefully to find out where he/she is stuck. Ask: What is hard? What would help?

58 Supervision..lots of it, all of the time!!! Simple and few rules Clear Limits Consistency/Routines Limited choices Emotional rewards Scripts for activities and social situations Allow time for calming and adjusting Safe place driven by comfort and soothing

59 Teach personal boundaries Role play and practice Model the use of feeling words and calming strategies

61 Can drinking by the father cause an FASD? Current science shows that an FASD can only happen when a pregnant woman consumes alcohol. Science does not yet show that the father s drinking prior to conception can cause an FASD. However, there is science that shows that a father s drinking can affect the genes of the next generation or the one after that 1-3. This process is called epigenetics. The best way a father can help prevent FASD is to help the mother avoid alcohol while she is pregnant, which may require him to reconsider his own drinking habits. 1 Haycock, P.C. (2009). Fetal Alcohol Spectrum Disorders: The epigenetic perspective. Biology of Reproduction, 81(4), Hegedus, A. M., Tarter, R. E., Hill, S. Y., Jacob, T., & Winsten, N. E. (1984). Static Ataxia: A possible marker for alcoholism. Alcoholism: Clinical and Experimental Research, 8, Tarter, R. E., Hegedus, A. M., Goldstein, G., Shelly, C., & Alterman, A. I. (1984). Adolescent sons of alcoholics: Neuropsychological and personality characteristics. Alcoholism: Clinical and Experimental Research, 8,

62 Small Group Exercise

63 Billy has been diagnosed with FAS. He is 16 years old and wants to quit school. He feels stupid and doesn t think anyone at school likes him, no one wants to sit with him at lunch. He does his homework but since he does not turn it in he is failing. His biggest struggle is reading. He prefers to read to his little sister who is 10 or his dog Parnell. Based on the strengths identified below identify as many strategies as possible to increase his feelings of success at school.

64 Friendly Determined Kind with little kids/animals Seeks responsibility Good with computers Energetic and involved Artistic- likes to draw Cooperative Wants to work with animals when he grows up

SAMHSA FASD Center for Excellence

SAMHSA FASD Center for Excellence FASD FACTS: How You Can Help Prevent Fetal Alcohol Spectrum Disorders FETAL ALCOHOL SPECTRUM DISORDERS The Basics Fetal Alcohol Spectrum Disorders (FASD) Umbrella term describing the range of effects that