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©2013 Teresa Kellerman 1 Fetal Alcohol Spectrum Disorders Screening and Intervention Strategies Presentation by Teresa Kellerman Arizona Division of Developmental Disabilities, Fetal Alcohol Resource Center Tucson, Arizona
©2013 Teresa Kellerman 2 Before we begin… Do you know where the bathrooms are? Please take the pre-test at top of page Cell phones turned off or silent
©2013 Teresa Kellerman 3 Sources The sources for information in this training include March of Dimes, National Institute on Alcohol Abuse and Alcoholism, the FASD Center for Excellence, the National Organization on Fetal Alcohol Syndrome, and the Institute of Medicine. Most of the citations can be found on the web site of the FAS Community Resource Center at
©2013 Teresa Kellerman 4 Agenda Review FASD Basics Impact on Brain Function and Behavior Physical Symptoms Neurological Symptoms Prescreening and Screening Intervention Strategies for All Ages
©2013 Teresa Kellerman 5 Meet Baby Annie Demo Baby
©2013 Teresa Kellerman 6 Impact on the Family A personal perspective John’s story, from infancy to adulthood The ideal life situation shown here is not the common experience of most families. John has graciously given permission for these stories to be shared, in order to increase understanding about persons with fetal alcohol disorders.
©2013 Teresa Kellerman 7 John’s Family
©2013 Teresa Kellerman 8 Definitions and Diagnostic Terms FASD = Fetal Alcohol Spectrum Disorders FASD is an umbrella term, not a diagnosis FASD includes the following diagnoses: FAS = Fetal Alcohol Syndrome pFAS = Partial Fetal Alcohol Syndrome ARND = Alcohol Related Neurodevelopmental Disorders (formerly called Fetal Alcohol Effects or FAE)
©2013 Teresa Kellerman 9 What Does FASD Look Like? There may or may not be physical symptoms birth defects facial features developmental delays In most cases, the child with FASD looks just like any other child.
©2013 Teresa Kellerman 10 Diagnostic Criteria for Full FAS Growth deficiency Microcephaly (small head circumference) Facial characteristics Organic brain damage History of prenatal exposure to alcohol
©2013 Teresa Kellerman 11 Facial Characteristics in Infancy Small eye openings Smooth philtrum Thin upper lip Less than 10% of children with FASD have distinctive FAS facial features
©2013 Teresa Kellerman 12 Most Cases of FASD are Invisible Only 11% of children with FAS or ARND receive a diagnosis by age Streissguth The facial features of FAS are not always easily recognized during the early years Facial features of FAS result from drinking during brief period, 3 rd week after conception. -- Goodlett, C.R., and Horn, K.H Mechanisms of alcohol-induced damage to the developing nervous system. Alcohol Research & Health25(3):
©2013 Teresa Kellerman 13 FASD and Developmental Disabilities The causes of most cases of cognitive disabilities remain unknown Alcohol during pregnancy is the leading preventable cause of birth defects, cognitive disabilities, and neurobehavioral disorders Only 15% of people with FASD qualify for developmental disability services
©2013 Teresa Kellerman 14 Alcohol is a Teratogen Alcohol causes more damage to the developing baby’s brain than any other substance, including marijuana, cocaine, meth, and heroin. -- Institute of Medicine Report to Congress
©2013 Teresa Kellerman 15 About Birth Mothers… Birth mothers who drink generally do not intend to harm their babies. Some birth mothers quit drinking after they find out they are pregnant. Almost all birth mothers who continue to drink are victims of sexual and/or physical abuse. About half of birth mothers have undetected Fetal Alcohol disorders themselves. -Sterling Clarren Study
©2013 Teresa Kellerman 16 Look Who’s Drinking Half of all women of childbearing age drink alcohol Half of all pregnancies are unplanned The rate of drinking reported by pregnant women in their first trimester is 23%. –SAMHSA 2008 National Survey on Drug Use and Health
©2013 Teresa Kellerman 17 How Alcohol Affects the Developing Fetus Tiny molecule passes through placenta BAC in mother = BAC in baby Placenta is formed and functioning about days after conception Weeks 2-10, baby is vulnerable to structural damage Brain is vulnerable during entire pregnancy
©2013 Teresa Kellerman 18 Effects of Ethanol Exposure on the Developing Embryo Induces cell death Disrupts the proliferation and differentiation of brain cells. Suppresses breathing movements during time before birth. Interferes with function of lungs
©2013 Teresa Kellerman 19 Effects of Ethanol Exposure on the Developing Embryo Yields ocular and forebrain abnormalities after early exposure. Alters genetic expression of tissue in craniofacial areas – underdeveloped jaw, cleft in lip or palate. Compromises development of the midline neural tube and forebrain.
©2013 Teresa Kellerman 20 Open Heart
©2013 Teresa Kellerman 21 Effects of Ethanol Exposure on the Developing Embryo Causes alterations in GABA(A) receptor expression in the hippocampus, thus contributing to behavioral disorders. Increases levels of maternal cortisol (stress hormone).
©2013 Teresa Kellerman 22 Effects of Ethanol Exposure on the Developing Embryo Causes long-term disruption in regulation of vasopressin, a neurotransmitter associated with social behaviors and mating. Disrupts production of oxytocin, which is important for bonding and attachment.
©2013 Teresa Kellerman 23 Effects of Ethanol Exposure on the Developing Embryo Impacts the limbic system and reduces capacity to adapt to stress. Moderate exposure (2 drinks/day) alters dopamine levels that affect behavior and disrupt the reward cycle in the brain.
©2013 Teresa Kellerman 24 Effects of Ethanol Exposure on the Developing Embryo Alters serotonin neurotransmission in discrete brain regions permanently Slows the migration and reduces the development of serotonin neurons by 20%-30%
©2013 Teresa Kellerman 25 The corpus callosum is sometimes smaller than normal But most persons with FASD will have an MRI that appears to be normal Ed Riley MRI graphics courtesy of Dr. Ed Riley
©2013 Teresa Kellerman 26 Why is FASD Different? Often unrecognized or misdiagnosed Symptoms are invisible Wide array of developmental levels Normal appearance and intelligence Birth mothers are blamed and judged Lack of support from family/community Overshadowed by neglect/abuse Discomfort with “fetal” issues Denial about alcohol as a drug
©2013 Teresa Kellerman 27 “Executive Functions” of the prefrontal cortex Inhibitions Planning Time perceptions Internal ordering Working memory Self monitoring Verbal self-regulation Motor control Regulation of emotions Motivation
©2013 Teresa Kellerman 28 One person – many levels of function
©2013 Teresa Kellerman 29 Neurological signs in early years Poor habituation Irritability – intense response to stress Longer time to recover from stress Sensitivity to external stimuli Feeding problems Disrupted sleep cycles Developmental delays These symptoms may or may not be present.
©2013 Teresa Kellerman 30 Difficult Infancy
©2013 Teresa Kellerman 31 Neurological signs during childhood Difficulties with bonding and attachment Inappropriately affectionate to strangers Inability to form healthy relationships Memory deficits (forget the rules) Poorly formed conscience (lying/ stealing) Stubborn, compulsive, perseverate, tantrums Arrested social development (“Think Young”) Poor judgment, lack of impulse control
©2013 Teresa Kellerman 32 Sensory Issues
©2013 Teresa Kellerman 33 The most troublesome symptoms are perceived as behavior problems: Willful misconduct Manipulation Trying to get attention Lazy “It’s not that they won’t, they can’t.” -Diane Malbin
©2013 Teresa Kellerman 34 John at School Misinterpretation of sexual behaviors
©2013 Teresa Kellerman 35 FASD and Social Development Research on comparison of social abilities among: Children with FAS Children with same IQ (no FAS) Control group (normal children) Researchers: Ed Riley and associates
©2013 Teresa Kellerman 36 Social Abilities Assessment Vineland Adaptive Behavior Scales Parent Version “VABS-II” Administered by school psychologist Comparison of social abilities of children with fetal alcohol syndrome to those of children with similar IQ scores and normal controls Thomas SE, Kelly SJ, Mattson SN, Riley EP. Alcohol Clin Exp Res 22:528–533, 1998.
©2013 Teresa Kellerman 37 Vineland Results Domain: Social skills Researchers: Ed Riley, Sarah Mattson Normal Low IQ FAS Vineland Scores Social/Emotional Age Chronological Age -----
©2013 Teresa Kellerman 38 Why We Need the Vineland If we only look at IQ scores and academic achievement, we will miss the measurements that mean the most, that show impairment in their ability to function in life. - Bledsoe 2010, APA online training
©2013 Teresa Kellerman 39 Why We Need the Vineland If we only look at IQ scores and academic achievement, we will miss the measurements that mean the most, that show impairment in their ability to function in life. - Bledsoe 2010, APA online training
©2013 Teresa Kellerman 40 Arrested Social Development Social developmental age is reflected in emotional regulation and conscience development. With FAS, social development is arrested rather than delayed (Riley et all 1998). Behavioral profile of children with FAS does not change when they become adults (Steinhausen et all 1993). The year old with FAS may be functioning intellectually at the level of a year old but socially-emotionally at the level of a 4-6 year old.
©2013 Teresa Kellerman 41 ADHHH- HHHHD Only 60% of children with FASD have ADHD with hyperactivity
©2013 Teresa Kellerman 42 Most Common Symptoms Across the Spectrum Most children with FASD have Memory deficits Lack of impulse control Poor judgment Emotional dysmaturity “Think Young”
©2013 Teresa Kellerman 43 Secondary Disabilities 94% - Mental health issues (depression) 80% - Trouble with independent living 80% - Trouble with employment 70% - Trouble in school 60% - Trouble with the law 60% - Confinement in prison or institution 45% - Legal problems with sexual behaviors 50% - 70% Adults abuse alcohol/drugs Ann Streissguth
©2013 Teresa Kellerman 44 Protective Factors Early diagnosis Eligibility for services Appropriate intervention services Stable home environment No domestic violence Ann Streissguth
©2013 Teresa Kellerman 45 Factors that Affect Behavior Dehydration Medication Diet Fatigue Sensory overload Emotional stress Neurotransmitter imbalance
©2013 Teresa Kellerman 46 Services For Children With FASD Only 15% of children with Fetal Alcohol disorders qualify for disability services. Between 75%-80% of children with FAS are in foster/adoptive care, where the prevalence of FAS is 10 times higher
©2013 Teresa Kellerman 47 Adjust Your Expectations "The greatest obstacle that individuals with FAS disorders must overcome is the chronic frustration of not being able to live up to the unrealistic expectations of others.” --Dr. Calvin Sumner, FAS/ADHD expert
©2013 Teresa Kellerman 48 Co-occurring Disorders Attention Deficit Hyperactive Disorder (with or without hyperactivity) Bi-Polar Disorder Oppositional Defiant Disorder Conduct Disorder Reactive Attachment Disorder Autism or Asperger’s Schizophrenia Anxiety Disorder Overlapping Characteristics
©2013 Teresa Kellerman 49 Greatest Challenges for Teens Behavior problems become more pronounced Physical symptoms are less apparent More than half of adults with FASD have clinical depression. 43% have threatened or contemplated suicide. 23% have attempted suicide. --Streissguth 1996
©2013 Teresa Kellerman 50 In John’s Words… TriLevelMan “I have the amazing ability to function at three different levels at the same time!”
©2013 Teresa Kellerman But they look so “normal”… How can we tell? Look at their history, family, and behaviors.
©2013 Teresa Kellerman 52 Pre-Screening for Possible FASD Has the child been in the care of someone other than birth mother for 30 days or longer? Is there a record of any other siblings who have a disorder associated with prenatal exposure to alcohol? One or more of the following symptoms:
©2013 Teresa Kellerman 53 Red Flag Symptoms Lack of eye contact during infancy Did not like to be cuddled as a baby Ever suspended from school or kicked out of a program due to behavior issues Accepted behavior management techniques just not very effective Makes the same mistakes over and over, in spite of the consequences
©2013 Teresa Kellerman 54 Red Flags - Adults History of alcohol abuse in birth family? Multiple home placements? Special ed classes in school? Suspended or dropped out from school? History of depression? ADHD? abuse? neglect? More than 1 jobs in past 2 years? Trouble managing money? Are friends older or younger? --Robin LaDue 2000, Streissguth 1996
©2013 Teresa Kellerman 55 How to Approach the Family “Your child seems to have symptoms of a neurodevelopmental disorder associated with frontal lobe dysfunction, which can lead to behavior problems that are not easy to cope with. This can be a result of traumatic brain injury or prenatal exposure to lead, mercury, or alcohol.”
©2013 Teresa Kellerman 56 How to Approach the Family “The most common cause of preventable neurobehavioral disorders is prenatal exposure to alcohol. We know that about 25% of women drink during pregnancy, often before they know they are pregnant. The Division is conducting a survey to determine how many individuals might have undetected Fetal Alcohol Disorders. Would you like to have your child screened for Alcohol Related Neurodevelopmental Disorder?”
©2013 Teresa Kellerman 57 There is no single program or plan that works for all persons with FASD Each plan needs to be individualized according to the person’s needs Clear understanding, realistic expectations, and creative problem solving will bring about solutions that work. Effective Intervention
©2013 Teresa Kellerman 58 Assessment Tools Bayley Scales (infants, toddlers) IQ test (WISC, WAIS, or Woodcock Johnson) Bender test (visual motor activities) Vineland Adaptive Behavior Scales, 2 nd Edition–parent version (functional abilities) Functional Behavior Assessment Social Problem Solving Inventory (judgment)
©2013 Teresa Kellerman 59 Intervention Guidelines: SCREAMS Model Structure: routine, easy steps, ABC Rules Cues: for meds, appointments, manners Role models: TV, movies, friends, family Environment: avoid chaos, stimulation Attitude: understand FASD neurology (who?) Meds and diet: restore balance and control Supervision: many need 24/7
©2013 Teresa Kellerman 60 Intervention for Infants Swaddling Soft clothing Facing away during bottle feeding Frequent feedings Frequent naps Avoid chaos and over-stimulation White noise or gentle music Sensory integration therapy
©2013 Teresa Kellerman Astrocytes and Neurotransmitters What do these pictures tell us?
©2013 Teresa Kellerman Neurotransmitters Keep us Happy Dopamine (excited happy) Serotonin (calm happy) Oxytocin (trust and love) Beta-Endorphin (opiate “high”) Dopamine (excited happy) “Yeay!!!” Serotonin (calm happy) “Mmmmm.” Oxytocin (trust and love) “Awwww.” Beta-Endorphin (opiate “high”) “Ahhhh.” Testosterone (sex drive) “Yahoo!!!” Cortisol (stress) “Ayyyyyeeeee!!!”
©2013 Teresa Kellerman Pain vs. Pleasure The Dopamine Effect “It’s all in your head.” What’s your favorite D-booster?
©2013 Teresa Kellerman Neurotransmitters Out of Balance Low Dopamine Low Serotonin Low Oxytocin Low Beta-Endorphin High Testosterone High Cortisol Low Dopamine … depression, cutting Low Serotonin … depression, impulsive Low Oxytocin … distant, mistrustful Low Beta-Endorphin … cravings High Testosterone … libido, aggression High Cortisol … overstressed: fight or flight reflex = run, fight, shut down
©2013 Teresa Kellerman 65 Maximize Brain Function Eliminate Additives No food coloring (especially Red 40) No preservatives (MSG) No nutrisweet (aspartame) Add Vitamins: Daily vitamin (color free) Omega E (fish oil, flaxseed) Lecithin (Choline) Chocolate, turkey, potatoes, bananas
©2013 Teresa Kellerman Neurotransmitters Back in Balance Increase Dopamine Increase Serotonin Increase Oxytocin Increase Beta Endorphin Decrease Testosterone Decrease Cortisol
©2013 Teresa Kellerman Balancing the Neurotransmitters Increase Dopamine –Lots of personal attention –Vigorous exercise (track, basketball, swimming) –Rewards, awards –Excitement –Humor, silliness –Games, contests, prizes –Music, dance –Medications (Stimulants: Ritalin, Adderall)
©2013 Teresa Kellerman Balancing the Neurotransmitters Increase Serotonin –Attention –Affection –Praise –Active Listening –Mild exercise (walking, swinging) –Chocolate (short term effects) –Medications (SSRIs = antidepressants like Paxil, Celexa, Prozac, Zoloft)
©2013 Teresa Kellerman Balancing the Neurotransmitters Increase Oxytocin –Cuddling –Massage –Thumb sucking, blankies –Trust-based relationships –Generosity and gift giving –Pleasant sensory experiences –Pets that like to be cuddled
©2013 Teresa Kellerman Oxytocin Transmitter: Carly
©2013 Teresa Kellerman Balancing the Neurotransmitters Increase Beta Endorphin –Exercise, daily: swim, walk, run, basketball, track –Vitamin, daily (especially B12, C) –Foods high in certain vitamins and nutrients Chocolate Bananas Strawberries Grapes Oranges Nuts Ice cream Pasta
©2013 Teresa Kellerman Balancing the Neurotransmitters Decrease Testosterone –SSRIs (Paxil, Celexa, Prozac Zoloft) Decrease Cortisol –Stress management skills –Recognize and treat PTSD –Meditation –Neurobiofeedback –Cognitive Behavior Therapy
©2013 Teresa Kellerman 73 Positive Reinforcement Reinforcements –Token rewards, consequences not as effective as we would like –Rewards: concrete and immediate Do NOT ignore unwanted behaviors –Collect data Day by day Morning, afternoon, evening Hour by hour
©2013 Teresa Kellerman 74 Daily Behavior Chart. TimeRespectRulesSelf care 8-9 no shower X-swearing, X-yell 5 min. NC – no chores w cue * *
©2013 Teresa Kellerman 75 Memory Enhancement Instructions: simple, concrete steps Show the child how Visual cues: symbols, signs, charts Teach one skill at a time Hands on activities, sensory, tactile Role play One-on-one read along stories Learning should be a fun experience Music and rhymes Minimize food additives
©2013 Teresa Kellerman 76 Positive Approach Offer cheerful encouragement Allow for “off” days One-on-one with eye contact Gentle pressure on shoulders Use appropriate humor, silliness Repeat, repeat, repeat Practice, practice, practice Adjust your expectations
©2013 Teresa Kellerman 77 Classroom Success Explain FASD to all students Enlist affected child in peer education Enlist affected child to help when able Establish reasonable goals Close monitoring at all times (1:1) Placement of desk close to teacher Minimize copying from blackboard Modify or minimize homework Watch out for “peers” – bad influence Minimize stress
©2013 Teresa Kellerman 78 For the IEP… Training on FASD for all staff (webinar) Close Monitoring –Playground time –Cafeteria, locker rooms, gymnasium –Before/after school time, between classes –School bus (bus aide, sit in front) Safe Haven = mentor, helper, aide Communication log, organizer
©2013 Teresa Kellerman 79 Conscience Development Stunted at 6-Year-Old Level “Think Young”
©2013 Teresa Kellerman 80 Behavioral Challenges Internalizing behaviors : Anxiety Depression Withdrawal/shutdown Externalizing behaviors: Hyperactivity Delinquency (non-violent criminal behaviors: theft, lying, vandalism) Inappropriate sexual behaviors Aggression : Verbal, Physical, Threats Oppositional defiant disorder Conduct disorder …… antisocial
©2013 Teresa Kellerman Aggression in Children with FASD Internal: Brain affected by many factors Nutrition (MSG, artificial colors, aspartame) Hydration Neurotransmitters and hormones Structural and functional brain abnormalities
©2013 Teresa Kellerman Aggression in Children with FASD External: They learn by imitating the behavior of others: Family violence, abuse, neglect School and neighborhood TV, movies, electronic games
©2013 Teresa Kellerman What do the studies show? Delinquent/criminal behaviors are mostly linked to biological parents Aggression is more often linked to learned behavior Childhood aggression is an early predictor of adult crime and violence.
©2013 Teresa Kellerman The Nature of Aggression Nature of aggression = multidimensional Different stimuli combine with different types of physiological and mental processes to create distinct forms of aggression. Predatory aggression requires self-control, lack of emotion, no empathy, used to dominate and control others. Intermittent explosive disorder = short period where the child loses control.
©2013 Teresa Kellerman What is causing the aggression? Self-defensive instinct? (appropriate) Impulsive response to conflict, threats or aggression by others? What’s happening in the child’s environment? Sensory overload, peer pressure. What’s happening in the child’s body? Health status, emotions, thoughts.
©2013 Teresa Kellerman The Easy Answer Stable family with healthy role models who can provide close supervision
©2013 Teresa Kellerman Strategies for Aggressive Behaviors in Children with FASD What is our primary goal? Success? Happiness Independence and self-sufficiency? Prevent secondary disabilities? Safe, healthy, loved?
©2013 Teresa Kellerman SCREAMS Strategies for Aggressive Behaviors Structure –Basic, simple rules –ABC Rules Ask for help Be respectful Communicate your needs –Most important rule? –Everyone follows the rules
©2013 Teresa Kellerman SCREAMS Strategies for Aggressive Behaviors Cues –Remind about the ABC Rules Ask for help Be respectful Communicate your needs –Remember rewards and consequences –Remind them to make the best choice
©2013 Teresa Kellerman SCREAMS Strategies for Aggressive Behaviors Role models –They learn by imitating others –Can we change our behaviors? –How can we change the behaviors of others? –How do we control what they see out there in the world?
©2013 Teresa Kellerman SCREAMS Strategies for Aggressive Behaviors Environment –How can we prevent sensory overload? –Minimize stress in the classroom –Reduce noise and chaos at home –How do we affect changes in environments we don’t control?
©2013 Teresa Kellerman SCREAMS Strategies for Aggressive Behaviors Attitude –Have realistic expectations –Try not to blame it all on poor parenting –Understand the nature of FASD –Brain damage + genetics + environment –Accept the reality of the “Invisible Gap” –Help the child use “Self Talk”
©2013 Teresa Kellerman SCREAMS Strategies for Aggressive Behaviors Meds and Diet –Help the child’s brain function better –Find a doctor willing to learn about FASD –Try different meds, combo, doses –Nutrition – no Red40, MSG, or Nutrisweet –Vitamin, Omega 3, Lecithin –Chocolate every day –Hydration (weight lbs / 2 = ounces per day)
©2013 Teresa Kellerman SCREAMS Strategies for Aggressive Behaviors Supervision –Immaturity + impulsivity + vulnerability + poor judgment = serious trouble –They can remember the rules and consequences, but they cannot always apply that information –They may be able to control impulses sometimes, but not all the time –What has happened in the past? –What are the risks if it happens again? –Enlist reliable, knowledgeable “external brain”
©2013 Teresa Kellerman What about meltdowns?
©2013 Teresa Kellerman 96 Find Their Gifts and Talents Nurture Success Music Art Poetry Dance Drama Pets and animals Working with hands
©2013 Teresa Kellerman 97 John with leaf blower
©2013 Teresa Kellerman 98 John: Self Portrait
©2013 Teresa Kellerman 99 Transitioning to the Future Presentation by Teresa Kellerman Fetal Alcohol Resource Center
©2013 Teresa Kellerman 100 Club COSTA: Circle of Support for teens and adults with FASD
©2013 Teresa Kellerman 101 Self-Determination For many, Self-Determination becomes Self-Termination The smarter they are, the greater the desire to be normal, the more resistance to being controlled, the higher the expectations, the higher the risk for failure Independence for many will lead them to homelessness, hospitalization, institutionalization, prison, or the morgue
©2013 Teresa Kellerman 102 Mom & Daughter Reasonable Plan
©2013 Teresa Kellerman 103 Setting Priorities Helping them to survive (literally) Providing a safe environment in which to realize potential and find success Giving them choices in how they want to live their life Giving them the guidance they need to make healthy choices, minimize risk
©2013 Teresa Kellerman 104 Happy, Healthy, Safe The End We can work together to help families with FASD find success.
©2013 Teresa Kellerman Which children will survive? The children with FASD who achieve success as adults are the ones whose parents are –Stable in their own relationships –Have processed their own past grief –Talk to their children about their disability –Active in parent support group
©2013 Teresa Kellerman 106 Resources FAS Community Resource Center –Support groups (Phoenix, Tucson, Parker, Sierra Vista, Flagstaff) –Lending library (Tucson) –Trainers (through The Arc) FAS Arizona Photos, personal stories, articles, online book store, reproducible documents, mail lists, referrals
©2013 Teresa Kellerman 107 Start at Fasstar Enterprises Click on the link for the FAS Community Resource Center Just google “FASD Articles”
©2013 Teresa Kellerman 108 Thank You! For more information contact Teresa Kellerman at (520)
©2013 Teresa Kellerman 1 Fetal Alcohol Spectrum Disorders Balanced Brain for Better Behavior Presentation by Teresa Kellerman Arizona Division of Developmental.
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