Working to Prevent Fetal Alcohol Spectrum Disorders Through High School and Middle School Curricula This presentation was designed for use in Educating Teachers, Administrators and Others Who Work with Children in the School System. FASD Indiana FASD Prevention Taskforce

Fetal Alcohol Spectrum Disorders: What They Are and How They Impact Your Students FASD Indiana FASD Prevention Taskforce

History of Fetal Alcohol Spectrum Disorders The effects of parental alcohol use have been known since the time of Aristotle First described in the literature by Jacqueline Rouquette in 1957, although the French physician Paul Lemoine (1968) is credited with the first publication FASD greek_aristotle.html

History of Fetal Alcohol Spectrum Disorders First identified in the US in 1973 by Jones and Smith, who coined the term “fetal alcohol syndrome” As of 1989, all alcohol beverages sold in the US must carry a warning that drinking during pregnancy can cause birth defects FASD

History of Fetal Alcohol Spectrum Disorders In 1978, the term “fetal alcohol effects” (FAE) was coined to describe conditions that are presumed to be caused by prenatal alcohol exposure but don’t meet the diagnostic criteria of FAS In 1996, the Institute of Medicine of the National Institutes of Health proposed the terms partial FAS, alcohol-related neurodevelopmental disorder (ARND), and alcohol-related birth defects (ARBD) Now considered “fetal alcohol spectrum disorders” FASD

History of Fetal Alcohol Spectrum Disorders “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.” National Taskforce on Fetal Alcohol Syndrome and Fetal Alcohol Effects, 2004 FASD

Fetal Alcohol Spectrum Disorders (FASD) Possible Diagnoses –Fetal alcohol syndrome (FAS) –Partial FAS (pFAS) –Alcohol-related neurodevelopmental disorder (ARND) –Alcohol-related birth defects (ARBD) += FAE (fetal alcohol effects) is an older term used to describe the last three listed above. FASD

On any given day in the United States… 10,657 babies are born 4 of these babies are born with spina bifida 1 of these babies is HIV positive 100 of these babies are born with a FASD 3 of these babies are born with muscular dystrophy 10 of these babies are born with Down syndrome 20 of these babies are born with FAS From the Executive Summary of the IOM Report. FAS Community Resource Center. FASD

How Common is FAS and FASD? The prevalence of FAS is estimated to be about 1 in 500 to 1 in 1000 births The prevalence of FASD is estimated to be nearly 1 in 100 births Eustance LW et al., 2003 FASD

How much is too much? How much is too much? The more alcohol consumed during pregnancy, the higher the risk for adverse effects –Binge drinking is particularly harmful! No amount of alcohol has been proven ‘safe’ to consume during pregnancy Every FASD is 100% preventable! FASD

What is a Drink? A Binge is four or more drinks on one occasion for a woman; five or more for a man A Drink is 12 ounces of beer, five ounces of wine, or 1.5 ounces of hard liquor = FASD

The Effect of Alcohol on a Baby’s Development Alcohol freely crosses the placenta from the mother to the baby Blood alcohol levels of the baby are approximately equal to that of the mother, within minutes of consumption The critical period is the entire pregnancy FASD

The Effect of Alcohol on a Baby’s Development Brain and nervous system Heart Limbs Lips and palate Ears Eyes Figure from Development of the brain is occurring throughout the pregnancy, which means that alcohol exposure at any point may cause brain damage. FASD

The Diagnosis of FAS Defined by four criteria: 1.Exposure to alcohol while in the womb 2.Characteristic facial features 3.Growth problems 4.Involvement of the central nervous system (the brain) FASD

FAS Facial Features FASD pubs.niaaa.nih.gov NOTE: Although these features are associated with fetal alcohol syndrome, they may also be seen in people who do not have a FASD.

FAS Facial Features: Smooth Philtrum and Thin Upper Lip Thin upper lip Smooth philtrum (little to no groove above upper lip) FASD

FAS Facial Features: Short Palpebral Fissures (Eye Openings) Eyes are measured from the outer corner to the inner corner FASD

FAS Facial Features FASD

The Effect of Alcohol on Growth Alcohol consumption increases the risk for having a baby with growth problems After birth, exposed children may continue to have a decreased growth rate and subsequent short stature Day and Richardson, 2004, AJMG 127C: FASD

Alcohol Affects Overall Brain Size Photo by Sterling Clarren, MD Brain of a healthy baby Brain of a baby exposed to alcohol FASD

Alcohol Affects Brain Function Developmental delays Learning difficulties Mental retardation Speech/language disorders Problems with memory, perception, sensory integration, or tactile defensiveness FASD

FAS Normal Malbin D Neurological differences often appear as: - Slower processing speed (thinking, hearing, etc.) - Problems storing and retrieving information - “Gaps,” difficulty forming links or associations - Difficulty generalizing - Difficulty with abstract concepts - Problems seeing next steps or outcomes - Disconnections (says one thing but does another) - Grasps pieces rather than concepts

A teenager with a FASD, who is 18 years old, may function at the level of a child or adolescent Emotional maturity Comprehension Social skills Concepts of money and time Living skills Reading ability Physical maturity 6 years 7 years 8 years 11 years 16 years 18 years Skill Developmental Age Equivalent Adapted from:

Primary vs. Secondary Disabilities Primary disabilities result from brain damage due to the alcohol exposure Secondary disabilities develop over time due to lack of intervention and unmet needs –they are believed to be preventable FASD

Secondary Disabilities in FASD Mental health issues Disrupted school experiences Inappropriate sexual behavior Trouble with the law Confinement in jail or treatment facilities Alcohol and drug problems Dependent living Employment problems FASD

Secondary Disabilities

Long Term Consequences of FAS Only 3% of children lived with biological mother Independent living was uncommon Poor behavior was common Average academic function was between 2 nd and 4 th grade FASD (Streissguth et al. 1991)

The Cost of FAS The comprehensive lifetime cost of one baby with FAS is at least $2 million The cost to American taxpayers for FAS is estimated to be $5 million a day, or up to $6 billion each year Lupton, et al. 2004; Substance Abuse and Mental Health Services Administration FASD

Strengths of Individuals with a FASD Friendly Likeable Helpful Determined Loving, caring, kind, sensitive, loyal and compassionate Energetic and hardworking Have points of insight Not malicious Cuddly and cheerful Happy in an accepting and supportive environment Fair and cooperative Spontaneous, curious, and involved FASD

Strengths of Individuals with a FASD Highly verbal Highly moral with a deep sense of fairness Kind with younger children and animals Creative Eager to please FASD

Strengths of Individuals with a FASD Learn by doing, by being shown, and/or by relationship Learn through consistency, continuity, and relevance Able to participate in problem solving with appropriate support Often have a strong long-term visual memory FASD

Working with individuals with a FASD

Working with Individuals with a FASD Build on strengths Use teaching strategies that focus on these strengths FASD

A Paradigm Shift “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 FASD

Systems of Care for Those with a FASD Healthcare services Educational services Social and community services Legal and financial services FASD

Management of Children with a FASD Physical, occupational, and speech therapies Psychiatrist or psychologist –Medications for ADHD, anxiety, depression, seizures, explosive behavior, etc. –Counseling Pediatrician or developmental pediatrician familiar with FASD Other specialists as needed FASD

Strategies for Working with Individuals Who Have a FASD For executive function deficits: –Use short-term consequences specifically related to the behavior –Establish achievable goals –Provide skills training and use a lot of role playing FASD

Strategies for Working with Individuals Who Have a FASD 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 FASD

Strategies for Working with Individuals Who Have a FASD For memory problems: –Provide one direction or rule at a time and review rules regularly –Provide repetition of instructional strategies –Use frequent reminders FASD

Strategies for Working with Individuals Who Have a FASD For sensory integration issues: –Simplify the individual’s environment –Take steps to avoid sensory triggers, which may include: Wearing clothes with tags or clothes made of certain fabrics Being in overly stimulating environments (i.e. crowded and loud places) Being in the presence of bright lights FASD

Strategies for Working with Individuals Who Have a FASD For self-esteem and personal issues: –Use person-first language –Do not isolate the person –Address issues of grief and loss –Do not blame people for what they cannot do –Set the person up to succeed FASD

Strategies for Working with Individuals Who Have a FASD To facilitate communication: –Use a slow pace and soft tone –Use simple, concrete directions and cues –Use more than one form of communication –Avoid the use of idioms –Avoid sarcasm –Use simple, clear language FASD

Strategies for Working with Individuals Who Have a FASD To facilitate learning: –Allow longer periods to learn and/or complete tasks –Break skills into smaller steps –Use concrete examples –Teach skills in the environment in which they are to be used FASD

Strategies for Working with Individuals Who Have a FASD Provide a stable, predictable nurturing environment Concentrate on strengths and talents Accept the child’s limitations Be consistent with discipline, school, and behaviors… Use positive reinforcement Closely supervise and be a good role model! Honor the person’s feelings REPEAT, REPEAT, REPEAT! FASD

Strategies for Working with Individuals Who Have a FASD For teenagers: –Focus education on job training and daily living skills –Closely monitor and supervise –Moderately increase responsibilities –Provide clear guidance/rules about behavior –Provide sex education –Provide appropriate/safe recreational activities FASD

Strategies for Working with Individuals Who Have a FASD Discipline: –Traditional behavioral interventions typically don’t work –Consider whether the behaviors reflect neurological differences –Consider the environment –Invite the person into to the discussion and try to identify “stuck points” FASD

Key Words to Remember Concrete Consistent Repetition Routine Simplicity Specific Structure Supervision FASD

For More Information Fetal Alcohol Spectrum Disorders: Trying Differently Rather Than Harder, by Diane Malbin, MSW. Available at Fetal Alcohol Syndrome: A Parents Guide to Caring for a Child Diagnosed with FAS, by Leslie Evans, MS, et al. Available for download at Fetal Alcohol Syndrome, Fetal Alcohol Effects: Strategies for Professionals, by Diane Malbin, MSW. Hazelden Foundation, Center City, MN. Fetal Alcohol Syndrome: Practical Suggestions and Support for Families and Caregivers, by Kathleen Tavenner Mitchell, MHS, LCADC, and the National Organization on Fetal Alcohol Syndrome. Available at FASD

References Alan Guttmacher Institute. Facts on American teens’ sexual and reproductive health. The Centers for Disease Control and Prevention. Fetal alcohol spectrum disorders. Day NL and Richardson GA An analysis of the effects of prenatal alcohol exposure on growth: A teratologic model. American Journal of Medical Genetics Part C. 127C: Eustace LW, et al Fetal alcohol syndrome: A growing concern for healthcare professionals. Journal of Obstetric, Gynecologic, and Neonatal Nursing. 32: The Institute of Medicine Report on FAS. IOMsummary.htm Lupton C, et al Cost of fetal alcohol spectrum disorders. American Journal of Medical Genetics Part C. 127C: Mattson SN, et al. Teratogenic effects of alcohol on brain and behavior. National Institute on Alcohol Abuse and Alcoholism. arh25-3/ htm Spadoni AD, et al Neuroimaging and fetal alcohol spectrum disorders. Neuroscience and Biobehavioral Reviews 31: Streissguth AP, et al Fetal alcohol syndrome in adolescents and adults. Journal of the American Medical Association. 265(15): Streissguth AP, et al Risk factors for adverse life outcomes in fetal alcohol sydnrome and fetal alcohol effects. Developmental and Behavioral Pediatrics 25(4): Substance Abuse and Mental Health Services Administration Fact Sheets. FASD

Helpful Websites National Organization on Fetal Alcohol Syndrome- Fetal Alcohol Syndrome, Education and Training Services, Inc.- The FASD Center for Excellence, Substance Abuse and Mental Health Services Administration- FASlink- The Arc- The Centers for Disease Control and Prevention- FASD

Indiana Resources The Fetal Alcohol Syndrome Center of Indiana - Indiana University Medial Center 975 West Walnut Street, IB 130 Indianapolis, IN Phone: Fax: Provides diagnosis, education and patient advocacy for those affected with prenatal alcohol exposure. CNS - Center for Neurobehavioral Sciences 3010 E. State Ft. Wayne, IN Phone: Toll Free: Provides therapy, education and patient advocacy for those affected with prenatal alcohol exposure. Organizes a support group for parents and caregivers (and other interested parties) of those with a FASD. FASD

Indiana Resources Indiana Department of Health - IN Perinatal Network (IPN), Prenatal Substance Use Prevention Program (PSUPP) 2 N Meridian Street; Indianapolis, IN Phone: Fax: Referrals and early intervention for substance-using pregnant women. Training for professionals. Indiana Protection and Advocacy Services 4701 N Keystone Avenue, Suite 222, Indianapolis, IN Phone: or Fax: Statewide agency for persons with developmental disabilities. FASD

Slides developed by:Lisa J. Spock, Ph.D., C.G.C. Gordon Mendenhall, Ed.D. Assisted by:David D. Weaver, M.D. Becky Kennedy, M.Ed. James M. Ignaut, M.A., M.P.H., C.H.E.S. Supported by: Indiana University School of Medicine Indiana State Department of Health Indiana Department of Education University of Indianapolis