Fetal Alcohol Spectrum Disorders (FASD)

1. Fetal Alcohol Spectrum Disorders (FASD) Brought to you by Anchorage School District Nurses Kim Beckett, Ruth Bogert, Luann Fogels, Jan Ilutsik, Paula Mottola, Amy Owens, Barb Pennington, Kathy Seybert, and Susie Whited

2. FASD is an umbrella term used to define the following disorders: • Fetal Alcohol Syndrome (FAS) • Partial Fetal Alcohol Syndrome (PFAS) • Fetal Alcohol Effects (FAE) • Alcohol-Related Neurodevelopment Disorder (ARND) • Alcohol-Related Birth Defect (ARBD)

3. What is FASD? FASD is permanent brain damage caused by prenatal exposure to alcohol. It is a lifelong disability and one that requires the affected child be supported in a stable and structured environment to maximize his or her potential.

4. Number of People with a FASD • No one knows for certain how many individuals are born each year with a FASD. • No one knows how many individuals are living with a FASD. Photo property of SAMHSA. • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

5. Do You have a Student with FASD in your Classroom? • It is likely that there are children with FASD in every school system. • A school system with10,000 students might have 80 to 100 students with learning problems related to FASD. SAMHSA FASD Center for Excellence: asdcenter.samhsa.gov

6. Cause of FASD • The sole cause of FASD is women drinking alcoholic beverages during pregnancy. • Alcohol is a teratogen. • There is no proven safe amount of alcohol use during pregnancy. “Of all the substances of abuse (including cocaine, heroin, and marijuana), alcohol produces by far the most serious neurobehavioral effects in the fetus.” —IOM Report to Congress, 1996 . • SAMHSA FASD Center for Excellence: asdcenter.samhsa.gov

7. FASD Facts • Leading known cause of preventable mental retardation. • Not caused on purpose. • Can occur anywhere and anytime pregnant women drink. • Not caused by biologic father’s alcohol use. • Not a new disorder. • SAMHSA FASD Center for Excellence: asdcenter.samhsa.gov

8. Simplified Fetal Development Chart

9. Physical Abnormalities associated with FASD EYE:crossed eyes, poor vision, optic nerve abnormalities EAR: outer ear abnormalities, low set ears, sensory, neural hearing loss, frequent ear infections MOUTH and JAW: dental problems, dysfunctional movements of tongue and larynx  SKELETAL DEFECTS: missing bones, clubfoot, hand and finger deviations ORGAN PATHOLOGY: heart problems, urogenital and genital anomalies, malformed or missing kidney SENSORY DEFICITS: tactile defensiveness or need for tactile stimulation hypersensitivity to sound, taste, light, smell IMMUNE SYSTEM: allergic reactions, altered susceptibility to infections

10. FASD and the Brain • Prenatal alcohol exposure causes brain damage. • Effects of FASD last a lifetime. • People with FASD can grow, improve, and function well in life with proper support. • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

11. Areas Most Affected by Prenatal Alcohol Ingestion

12. FASD and the Brain Permission to use photo on file. • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

13. A B C FASD and the Brain A. Magnetic resonance imaging showing the side view of a 14-year-old control subject with a normal corpus callosum; B. 12-year-old with FAS and a thin corpus callosum; C. 14-year-old with FAS and agenesis (absence due to abnormal development) of the corpus callosum. Source: Mattson, S.N.; Jernigan, T.L.; and Riley, E.P. 1994. MRI and prenatal alcohol exposure: Images provide insight into FAS. Alcohol Health & Research World 18(1):49–52. • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

14. FASD and the Brain A These two images are of the brain of a 9-year-old girl with FAS. She has agenesis of the corpus callosum, and the large dark area in the back of her brain above the cerebellum is essentially empty space. Source: Mattson, S.N.; Jernigan, T.L.; and Riley, E.P. 1994. MRI and prenatal alcohol exposure: Images provide insight into FAS. Alcohol Health & Research World 18(1):49–52. • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

15. + = Permanent Lifelong Brain Damage Alcohol KILLS a growing brain!

16. Parents Parents are often aware that there is something different about the way their child behaves and learns but may not know exactly why that is. Early experiences in school are often the first time that specific concerns are raised and a family is encouraged to seek medical or psychological evaluations.

17. Typical Difficulties for Students with a FASD

18. Memory Problems • Multiplication • Time sequencing ? • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

19. Information Processing Problems • Say they understand when they do not • Have verbal expressive skills that often exceed their level of understanding • Misinterpret others’ words, actions, or body movements • Have trouble following multiple directions Straighten up your room and put your toys away. Do you understand? YES! (How do you straighten up? Make sure the bed/chair is straight?) • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

20. Sensory Integration Issues • Are overly sensitive to sensory input • Upset by bright lights or loud noises • Annoyed by tags in shirts or seams in socks • Bothered by certain textures of food • Have problems sensing where their body is in space (i.e., clumsy) • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

21. Go with strangers Repeatedly break the rules Cannot entertain themselves Have trouble changing tasks Do not accurately pick up social cues Do not learn from mistakes or natural consequences Frequently do not respond to point, level, or sticker systems Give in to peer pressure Have trouble with time and money Executive Function Deficits I’m late! I’m late! I’m late! • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

22. Information Processing Problems • Do not complete tasks or chores and may appear to be oppositional • Have trouble determining what to do in a given situation • Do not ask questions because they want to fit in • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

23. Primary Disabilities of Students with a FASD • Lower IQ • Impaired ability in reading, spelling, and arithmetic • Lower level of adaptive functioning; more significantly impaired than IQ Permission to use photo on file. Streissguth, et al. (1996) • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

24. 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 Secondary Disabilities of Students with a FASD Streissguth, et al. (1996) • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

25. Approximate Percent of Persons with FASD Secondary Disabilities  = Age 6+ = Age 12+ = Age 21+ • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

26. Stable home Early diagnosis No violence against oneself More than 2.8 years in each living situation Recognized disabilities Diagnosis of FASD Good quality home from ages 8 to 12 Basic needs met for at least 13 percent of life Secondary Disabilities Reduced Streissguth, et al. (1996) • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

27. Overall Difficulties for Students with a FASD Information • Taking in information • Storing information • Recalling information when necessary • Using information appropriately in a specific situation • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

28. Faces of FASD • The different ‘faces’ of FASD. Sometimes the condition is not physically obvious and the brain damage of prenatal exposure to alcohol is not detected until much later in life • “19 in 20 FASD afflicted children have no obvious physical characteristics of FAS.” • “The most vulnerable children are those without physical characteristics of FAS” Characteristic facial features in children of different ethnicities with fetal alcohol spectrum disorders. (A) Child of Northern European descent. (B) Native American child. (C) Black child. (D) Biracial child - Black/White. Class Notes - May 28, 2008

29. Diagnosing Fetal Alcohol Syndrome • Prenatal maternal alcohol use • Growth deficiency • Central nervous system abnormalities • Dysmorphic features • Short palpebral fissures • Indistinct philtrum • Thin upper lip Source: Astley, S.J. 2004. Diagnostic Guide for Fetal Alcohol Spectrum Disorders: The 4-Digit Diagnostic Code, Third Edition. Seattle: University of Washington Publication Services, p. 114. Caucasian African American • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

30. FASD and Mental Health Disorders • Prenatal alcohol exposure may lead to severe behavioral, cognitive, and psychiatric problems • FASD is not a psychiatric disorder • FASD can co-occur with a mental health or substance abuse disorder DSM-IV • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

31. Risks to a Child of Not Accurately Identifying and Treating FASD • Loss of family • Increased substance use • Premature death Photo courtesy of Microsoft. • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

32. Strategies To Improve Outcomes for Students with a FASD Sensory Integration Issues • Simplify the student’s environment • Provide a lot of one-to-one physical presence • Take steps to avoid sensory triggers • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

33. Strategies To Improve Outcomes for Students with a FASD Strategies for Memory Problems • Provide one direction or rule at a time and review rules regularly. • Use a lot of repetition. • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

34. Strategies To Improve Outcomes for Students with a FASD Strategies for Information Processing Problems • Check for understanding • Use literal language • Teach the use of calculators and computers • Look for misinterpretations of words or actions and discuss them when they occur Tell me what you just heard me say. • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

35. Strategies To Improve Outcomes for Students with a FASD Strategies for Executive Function Deficits • Establish achievable goals • Use short-term consequences specifically related to the behavior • Provide skills training and use a lot of role playing. Photo property of SAMHSA. • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

36. Strategies To Improve Outcomes for Students with FASD Self-Esteem and Personal Issues • Use person-first language (e.g., “child with FASD,” not “FASD child”) • Do not isolate the student • Do not blame students for what they cannot do • Set the student up for success Congratulations • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

37. Avoid Assumptions • The biggest mistake many professionals make in working with students with FASD is thinking that, because they said it, they are capable of doing it without ongoing assistance. • It takes them longer to process. • In a verbal-only instructional setting, students with FASD may understand only every third word.

38. Please Remember • Punishing a child with FASD for a behavior resulting from brain dysfunction is like punishing a blind child for bumping into the furniture. • Never, ever punish a child with FASD for forgetting. • Students with FASD are developmentally younger than their chronological age. When determining age appropriate behavior, their developmental age is roughly half their chronological age.

39. Basic Classroom Accommodations • Adequate levels of supervision • Structure and routine • Language that is appropriate and individual to the student

40. More Strategies… Role play, Social stories, Puppets, Sign Language, Modelingwith pictures, Give a concrete list, Use repetition, Inform student if schedule will change, Peer tutor, Seating accommodations, Personalize rules with their names, Do not use “why” questions, Teacher or peer escorts, Visual or verbal reminder when end of recess is approaching, Use color coding, Use video instruction, Use rhythm, rhyme and rap, Computer based learning programs, Flashcards, Rephrasing, Physical guidance, Provide extra time, Create a safe place in each classroom

41. Strategies for Working with Secondary Students • Always make concrete statements, not generalizations • Consequences must be adaptable • Consistency in schedules or routines • Consistency reduces stress • Interpreter is needed to guide them through life due to naiveté • Listen • Make personal relationships early on • Music and rhythm make a difference, use it whenever possible • Never punish a child with FASD for bad behavior • Patience and a sense of humor are crucial

42. Strategies for Working with Secondary Students, continued… Pay attention to bullying, many FASD children are being mistreated Power struggles do not work, practice what to do, never what NOT to do Provide a safe place when student is in “overload” for relaxation and de-escalation Redefine success, help the child be successful today Slow the pace by using sign language, pictures, and peer helpers Success one day at a time, build habit patterns for the future Think of FASD as a disability of language rather than of behavior Try alternative instructional modalities (if one way does not work, try another) Use multi-sensory modalities as much as possible Realize that developmental age is approximately one half of cognitive age When reviewing rules, have the student write his/her own name in front of the rule so the rule will directly apply

43. “SOAP” Strategy • S - If a student with FASD is finding it frustrating or difficult to do something, Stop the activity • O - Observing a child’s actions in a busy classroom can be difficult; it is essential, however, especially if the situation involves conflict with the child or you are feeling frustrated • A - Assess your observations of a child’s behavior in terms of differences in his or her brain function. The child is not being bad; the brain is damaged • P - Successful Plans are creative. Accommodating children, rather than trying to change or “fix” them, means a greater likelihood of success

44. Transitions • Pay attention to all Transitions; Elementary to Middle School… Middle to High School…High School to Adult Life. • Planning should begin well before the move to the new setting to give ample time for placement choices and orientation. • Requires ongoing teaching of daily living skills.

45. Concrete Consistency Repetition Routine Simplicity Specific Structure Supervision Eight “Magic Key” Strategies in Responding to Students with FASD “Making a Difference” 2006 Government of Yukon

46. Friendly Likable Desire to be liked Helpful Determined Have points of insight Not malicious Strengths of Students with a FASD Dubovsky, Drexel University College of Medicine (1999) • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

47. Cuddly and cheerful Happy in an accepting and supportive environment Loving, caring, kind, sensitive, loyal, and compassionate Energetic and hard working Fair and cooperative Spontaneous, curious, and involved More Strengths of Students with a FASD Permission to use photos on file. • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

48. Highly verbal Highly moral—deep sense of fairness Kind with younger children and animals Able to participate in problem solving with appropriate support Even More Strengths of Students with a FASD • SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

49. Public Challenge and Responsibility • The statement that FASD students do not “grow up”, but just “get older” with the same behaviors and patterns and needs is an important concept to understand. • As a community, it is imperative to recognize, strategize and plan for the future of these individuals in our society.

50. Children with a FASD grow up blaming themselves for a disability that is… 100% Preventable