Fetal Alcohol Spectrum Disorders (FASD): Identification and Interventions

1. Fetal Alcohol Spectrum Disorders (FASD): Identification and Interventions Kathryn Shea, LCSW President/CEO The Florida Center for Early Childhood Sarasota, FL

2. FASD • Crosses all socioeconomic groups. Lower socioeconomic group: 2.6 per 1000 live births, compared with 0.6 per 1000 live births from middle SES group. • New estimate is 1 out of every 8 Americans are children of problem drinkers. • FAS is now the leading known cause of intellectual disability in the U.S., exceeding spina bifida and down syndrome, and is the only one that is preventable. Some research is suggesting it is the leading cause of learning disabilities and ADHD and is showing a high correlation with children born with cerebral palsy.

3. FASD • Alcohol produces by far the most serious neurobehavioral effects in the fetus when compared to other drugs, including heroin, cocaine and marijuana.* • Annual cost estimates for FAS and related conditions in the United States range from $75 million to $9.7 billion.* • There has been no reduction in the proportion of women who are heavy drinkers at the time of conception. * * Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention and Treatment, 1996

4. What is Fetal Alcohol Syndrome? • Fetal Alcohol Syndrome is the original name given to a cluster of physical and mental defects present from birth that is the direct result of a woman’s drinking alcoholic beverages while she is pregnant. This year marks the 40th anniversary of FAS diagnosis.

5. Fetal Alcohol Syndrome • Specific pattern of facial features • Pre- and/or postnatal growth deficiency • Evidence of central nervous system dysfunction • Alcohol use during pregnancy Photo courtesy of Teresa Kellerman

6. Source: http://www.depts.washington.edu/fasdpn/face.html

7. Facial Dysmorphology Guide (Used with permission from Dr. Susan Astley, University of Washington) The three facial features of FAS include: short palpebral fissures, a smooth philtrum, and a thin upper lip (Rank 4 or 5 on the Lip-Philtrum Guide (with permission, Susan Astley, University of Washington).

8. 4 – Digit Diagnostic Code

9. Other FAS Physical Abnormalities 98% under normal height and weight 84%Microcephalic 89% Mental and Motor Retardation 80% Speech impediments 20% Hearing problems 20% Swallowing/Feeding 72% Hyperactive 58% Slack muscles 20% Autism/Aggressive/Social Problems 95% Facial anomalies 29% Heart defects 10% Kidney defects 46% Genital deformities 25% Eye/vision problems 16% Bent crooked little finger 51% Shortened and bent little finger 13% Underdeveloped fingers 9% Hip deformities 16% Small teeth 7% Concave chest 7-20% Cleft palate 12% Hernia 44% Spinal dimple 35% Hair growth on back of neck Source: Prof.Dr.med. Hermann Löser from the University Childrens Clinic, Münster, Germany. He has followed hundreds of FAS children for over 20 years. His results are in "Ratgeber zur Alkoholembryopathie" published by Lambertus Verlag Freiberg.

11. What is Fetal Alcohol Spectrum Disorders ? Released April 15, 2004 by NOFAS: “Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications. The term FASD is not intended for use as a clinical diagnosis.”

12. Screening for FASD • Introduce Screening Tool

14. The effect of alcohol on a baby’s development • As a baby develops, cells that will become the brain and nervous system attach to each other. • Alcohol interferes with this process of brain development. • The baby’s brain may be smaller, structurally or functionally damaged, with right/left hemisphere abnormalities. Source: Dr. Edward Riley, Ph.D., San Diego State Univ.,

15. Brain Abnormalities related to Prenatal Alcohol Exposure Source: Clarren, S,K.

16. Brain Size in infants exposed with and without full features of FAS

17. Corpus callosum abnormalities Mattson, et al., 1994; Mattson & Riley, 1995; Riley et al.,1995

18. FASD: Core Diagnostic CriteriaCNS Abnormalities • Neurological • Seizures • Weakness • Persistence of Primitive reflexes • Hypotonia • Ataxia • Abnormal Motor Function

19. Risk Factors • Dose of alcohol • Pattern of exposure - binge vs chronic • Developmental timing of exposure • Genetic variation • Maternal characteristics • Synergistic reactions with other drugs • Interaction with nutritional variables

20. How FASD affects Sensory Processing • Sensory Integration begins at conception, and continues through childhood (maturing at 8-10 years) • Continues to be refined throughout our lifetime • Many children with FASD have sensory integration problems

21. How FASD affects Sensory Processing • Sensory Integration is a developmental process • Takes place in the central nervous system • Involves ability to take in information through the senses, organize it in our brains and use it to respond appropriately

22. How FASD affects Sensory Integration/Sensory Processing The brain must properly process information from the senses to develop: concentration and organization academic learning ability the capacity for abstract reasoning specialization of each side of the body and brain self-esteem self-control

23. Normal Sensory Integrationsource: Dorothy Schwab

24. Disordered Sensory Integrationsource: Dorothy Schwab

25. Results of Poor Sensory Processing • SENSORY OVERLOAD (Shutdown or Disorganized Behavior) • EMOTIONAL LABILITY/ IRRITABILI1Y/INSTABILITY • DIFFICULTY IN INTER-PERSONAL RELATIONSHIPS • LEARNING PROBLEMS • BEHAVIOR PROBLEMS • POOR SELF-ESTEEM • PERCEPTUAL PROBLEMS

26. Qualities of a Sensory Processing Disorder (SPD) • Integration of the sensory systems is the prerequisite for all higher level skills. (Ayres) • “If, in the central nervous system, those seven sensory systems are adequately registering and processing information, all sensorimotor development will be supported.” (Williams and Shellenberger)

27. Issues with State Regulation • What is state regulation? • State is a group of characteristics that regularly occur together; body activity, eye movements, facial movements, breathing pattern, and level of response to external stimuli (e.g., handling) and internal stimuli (e.g., hunger). Blackburn, S & Blakewell-Sachs (2003). Understanding the Behavior of Term . Infants. White Plains, NY: March of Dimes Birth Defects Foundation

28. Arc of State Regulation Alert Processing “revved up” “dampened down” “Gleam in the Eye” Attentive, Interested, Engaged, Joyful BRAKE GAS alert, not processing excited nervous flat shouting daydreaming indifferent agitated dampened angry withdrawn flooded depressed panicked sad frozen rageful terror (Constance M. Lillas, Ph.D.; 1999 Slide courtesy of A. Pinto, Ph.D. 2005) Stressor

31. Behaviors Associated With FASD Infancy - poor sleep patterns, difficulty feeding, fussy/irritable temperament, prolonged crying, difficult to soothe/comfort, over/under reactive to stimuli or sensations, difficulty forming attachment Toddler/Early Childhood – aggressive, highly active and impulsive, poor attention span, disorganized, no sense of danger, poor sleep patterns, pica, self-injurious, poor sensory processing and self-regulation

32. Behaviors Associated With FASD Latency age – poor cause/effect relationships, does not understand rules or consequences, difficulty at home and school, anxious, fearful, takes things that don’t belong to them, tells stories or fabricates when not sure how to answer, poor abstract thinking, poor social skills, poor sensory processing Adolescence/Adulthood - Cannot manage daily living skills without adult supervision, overly friendly with poor physical/verbal boundaries, poor judgment, easily influenced by peers, might be able to state the rule but cannot follow it, can have high verbal skills but poor thinking skills, impulsive, poor sensory processing

33. What Causes These Behaviors? • Behaviors associated with FASD are caused by CNS (brain) damage. • Environmental factors can compound the problem (domestic violence, neglect/abuse, poverty, teen or single parent, parental substance abuse) • Multiple disruption from relative or foster care placements due to behavior disrupts attachment which is critical to sound social/emotional development

34. Secondary Disabilities Individuals with FAS/FAE have a range of secondary disabilities – disabilities that the individual is not born with, and which could be ameliorated with appropriate interventions. Streissguth, et al., 1996

35. Fetal Alcohol Spectrum Disorders

36. Successes take place when we stop trying harder and start trying differently. • From: Fantastic Antone Succeeds

37. Fetal Alcohol Spectrum Disorders Intervention Strategies • Assessment of Child Strengths/Deficits in all developmental areas – • Sensory, Motor, Language, Cognitive, Emotional, Social • Treatment Plan should build on strengths, improve deficits, and enhance functioning

40. FASD Intervention Strategies Clinical Interventions • Physical – Brain Gym, Yoga, Relaxation Techniques, Deep Breathing, Sensory Activities, Obstacle Course • Affective – DIR based therapy, role playing, social stories, feeling collages, feeling cards, therapeutic games, emotional thermometer • Cognitive – Self-Talk, Problem-solving, visual-spatial games, language, story building, treasure hunts • Behavior – Positive Behavior Support Model (PBS), Alert Program for Self-Regulation, Role Play, Positive Peer Support/Mentoring, Video taping/review

41. Therapy Tools/Strategies This is my brain! It helps me to think and make the right choice! k. shea,, 2002 • Kathryn Shea

42. Therapy Tools/Strategies • Problem Solving • Name: _____________________ My Problem: _____________________ • Hmmm. What should I do?? Ah Ha!!! I have an idea! I will _______________

43. Therapy Tools/Strategies • MindUP™ Curriculum by the Hawn Foundation • MindUP™ for schools is an evidence-based, CASEL accredited social and emotional learning program that reduces stress, improves academic performance, strengthens abilities for concentration, encourages emotional regulation, and nurtures optimism, empathy, and happiness in the classroom.

44. Intervention Services for Parents/Caregivers • Relationship Assessment • Affective tone • Parent handling of child • Child’s response to handling • Parents understanding of child’s behaviors • Relationship Interventions • DIR Model (Floor Time) • Theraplay • Child Parent Psychotherapy • Families Moving Forward (FMF)

45. Substance Abuse Treatment for Women with FASD • Estimated that over 50% of women in SA treatment have an FASD • Traditional treatment approaches are ineffective for these women • Cognitive deficits (poor planning, poor organization, poor memory, poor cause/effect) • Need for FASD screening of all women entering treatment and change of treatment protocol to ensure success

46. Ten Tips for Parents of Children with Fetal Alcohol Spectrum Disorder • Don't sweat the small stuff. Choose one or two critical behaviors at a time to work on. • Be firm, yet flexible. Rigidity can increase oppositional behavior. Remember they are not willfully trying to make you exhausted or crazy.   • Allow yourself to grieve the loss of a "whole" person.  • Don't expect them to act the same as every other child their age. They are not like children who don't have brain damage. • Keep the mood positive. Give five times more praise to every one correction.

47. Don't hurry them. Defiant behavior increases when under pressure. Ten Tips for Parents of Children with Fetal Alcohol Spectrum Disorder • Don't hurry them. Defiant behavior increases when under pressure. • Don't take them places where they are likely to have problems. These are most often church, restaurants, malls, new and unfamiliar places, and events with high numbers of people and loud noise. • Do something fun with them everyday.  Encourage their sense of humor and yours. • Advocate for their needs.  It will make you feel better about them and yourself. • Do something for yourself every day.  A good warm bubble bath with soft music is a great way to end a stressful day. Kathryn Shea, LCSW

48. Fetal Alcohol Spectrum Disorder What can Case Managers/Front Line Workers Do? • Obtain substance abuse history on mother and family members (age of first drink, history of rehab prior to and following pregnancy, medical issues which might be related to alcohol) • Obtain birth and medical records on children in care, especially those demonstrating developmental, learning, or behavioral problems

49. Fetal Alcohol Spectrum Disorder What can Case Managers Do? • Refer for Assessment of Child Strengths/Deficits in all developmental areas – • Sensory, Motor, Language, Cognitive, Emotional, Social (Ages and Stages for young children) • Check educational placement and status (Special Ed services, IEP, classification, behavior/learning problems, etc.) • Make referrals for specialty assessments in needed areas (Speech, OT, PT, Mental Health, Psychology, FASD Diagnostic Clinic)

50. Fetal Alcohol Spectrum Disorder Universal Protective Factors • Living in a stable and nurturing home for over 72% of life; • Being diagnosed before the age of 6 years; • Never having experienced violence against oneself; • Staying in each living situation for an average of more than 2.8 years;