working to prevent fetal alcohol spectrum disorders through high school and middle school curricula...

Working to Prevent Working to Prevent Fetal Alcohol Spectrum DisordersFetal Alcohol Spectrum Disorders

Through High School and Through High School and Middle School CurriculaMiddle School Curricula

This presentation was designed for use in This presentation was designed for use in Educating Teachers, Administrators and Others Who Educating Teachers, Administrators and Others Who

Work with Children in the School System.Work with Children in the School System.

FASD

Indiana FASDPreventionTaskforce

Fetal Alcohol Spectrum Fetal Alcohol Spectrum Disorders:Disorders:

What They Are and How They What They Are and How They Impact Your StudentsImpact Your Students

FASD

Indiana FASDPreventionTaskforce

History of Fetal Alcohol History of Fetal Alcohol Spectrum DisordersSpectrum 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

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www.nlm.nih.gov/hmd/greek/greek_aristotle.html


• 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

www.fasdcenter.samhsa.gov


• 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”

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• “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

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Fetal Alcohol Spectrum Fetal Alcohol Spectrum Disorders (FASD)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.

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On any given day in the On any given day in the United States…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. http://www.come-over.to/FASCRC

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How Common is FAS and 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

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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!

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What is a Drink?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

= =

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The Effect of Alcohol onThe Effect of Alcohol on a Baby’s Development 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

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The Effect of Alcohol onThe Effect of Alcohol on a Baby’s Development a Baby’s Development

Brain and nervous system

Heart

Limbs

Lips and palate

Ears

Eyes

Figure from http://www.fda.gov/cber/gdlns/rvrpreg_fig1.gif

Development of the brain is occurring throughout the pregnancy, which means that alcohol exposure

at any point may cause brain damage.

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The Diagnosis of FASThe 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)

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FAS Facial FeaturesFAS Facial Features

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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: FAS Facial Features: Smooth Philtrum and Thin Upper LipSmooth Philtrum and Thin Upper Lip

Thin upper lipSmooth philtrum(little to no groove above upper lip)

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FAS Facial Features: FAS Facial Features: Short Palpebral Fissures (Eye Openings)Short Palpebral Fissures (Eye Openings)

Eyes are measured from the outer corner to the inner corner

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FAS Facial FeaturesFAS Facial Features

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www.come-over.to/FAS/JohnGrowsUp.htm

http://www.come-over.to/FAS/JohnGrowsUp.htm

The Effect of Alcohol The Effect of Alcohol on Growthon 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:28-34. www.cdc.gov/growthcharts

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Alcohol Affects Alcohol Affects Overall Brain SizeOverall Brain Size

Photo by Sterling Clarren, MDhttp://www.come-over.to/FAS/FASbrain.htm

Brain of a healthy baby

Brain of a baby exposed to alcohol

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Alcohol Affects Brain FunctionAlcohol Affects Brain Function

• Developmental delays

• Learning difficulties

• Mental retardation

• Speech/language disorders

• Problems with memory, perception, sensory integration, or tactile defensiveness

FASD

FASNormal

Malbin D. 2002

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 A teenager with a FASD, who is 18 years old, may function at the level of a child or adolescentfunction 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

6 years

7 years

8 years

11 years

16 years

18 years

Skill Developmental Age Equivalent

Adapted from: www.efsmanitoba.com/html/Final%20Paper%20Defining%20Needs%20of%20women%20with%20FAS_E2.htm

Primary vs. Secondary Primary vs. Secondary DisabilitiesDisabilities

• 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

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Secondary Disabilities in FASDSecondary 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

http://come-over.to/FAS/

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Secondary DisabilitiesSecondary Disabilities

www.fasdcenter.samhsa.gov

Long Term Consequences Long Term Consequences of FASof FAS

• Only 3% of children lived with biological mother

• Independent living was uncommon

• Poor behavior was common

• Average academic function was between 2nd and 4th grade

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(Streissguth et al. 1991)

The Cost of FASThe 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

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Strengths of Strengths of Individuals with a FASDIndividuals 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

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

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• 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

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Working with individuals Working with individuals with a FASDwith a FASD

Working with Working with Individuals with a FASDIndividuals with a FASD

• Build on strengths

• Use teaching strategies that focus on these strengths

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A Paradigm ShiftA 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

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Systems of Care for Those Systems of Care for Those with a FASDwith a FASD

• Healthcare services

• Educational services

• Social and community services

• Legal and financial services

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Management of Management of Children with a FASDChildren 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

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Strategies for Working with Strategies for Working with Individuals Who Have a FASDIndividuals 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

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• 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

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• For memory problems:– Provide one direction or rule at a time and

review rules regularly– Provide repetition of instructional strategies– Use frequent reminders

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• 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

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• 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

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• 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

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• 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

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• 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!

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• 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

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• 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”

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Key Words to RememberKey Words to Remember

• Concrete• Consistent• Repetition• Routine• Simplicity• Specific• Structure• Supervision

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For More InformationFor More Information

• Fetal Alcohol Spectrum Disorders: Trying Differently Rather Than Harder, by Diane Malbin, MSW. Available at www.FASCETS.org.

• Fetal Alcohol Syndrome: A Parents Guide to Caring for a Child Diagnosed with FAS, by Leslie Evans, MS, et al. Available for download at http://otispregnancy.org/pdf/FAS_booklet.pdf

• 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 http://www.nofas.org/estore

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ReferencesReferences

• Alan Guttmacher Institute. Facts on American teens’ sexual and reproductive health. www.guttmacher.org/pubs/fb_ATSRH.htm

• The Centers for Disease Control and Prevention. Fetal alcohol spectrum disorders. www.cdc.gov/ncbddd/fas/fasprev.htm

• Day NL and Richardson GA. 2004. An analysis of the effects of prenatal alcohol exposure on growth: A teratologic model. American Journal of Medical Genetics Part C. 127C:28-34.

• Eustace LW, et al. 2003. Fetal alcohol syndrome: A growing concern for healthcare professionals. Journal of Obstetric, Gynecologic, and Neonatal Nursing. 32:215-221.

• The Institute of Medicine. 1996 Report on FAS. http://www.come-over-.to/FAS/ IOMsummary.htm• Lupton C, et al. 2004. Cost of fetal alcohol spectrum disorders. American Journal of Medical

Genetics Part C. 127C:242-50.• Mattson SN, et al. Teratogenic effects of alcohol on brain and behavior. National Institute on

Alcohol Abuse and Alcoholism. http://pubs.niaaa.nih.gov/publications/ arh25-3/185-191.htm• Spadoni AD, et al. 2007. Neuroimaging and fetal alcohol spectrum disorders. Neuroscience and

Biobehavioral Reviews 31:239-245.• Streissguth AP, et al. 1991. Fetal alcohol syndrome in adolescents and adults. Journal of the

American Medical Association. 265(15):1961-7. • Streissguth AP, et al. 2004. Risk factors for adverse life outcomes in fetal alcohol sydnrome and

fetal alcohol effects. Developmental and Behavioral Pediatrics 25(4):228-238.• Substance Abuse and Mental Health Services Administration Fact Sheets.

http://www.fasdcenter.samhsa.gov/grabGo/factSheets.cfm

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Helpful WebsitesHelpful Websites

• National Organization on Fetal Alcohol Syndrome- www.nofas.org

• Fetal Alcohol Syndrome, Education and Training Services, Inc.- www.fascets.org

• The FASD Center for Excellence, Substance Abuse and Mental Health Services Administration- www.fascenter.samhsa.gov

• FASlink- http://www.acbr.com/fas/• The Arc- http://www.thearc.org/fetalalcohol.html• The Centers for Disease Control and Prevention-

http://www.cdc.gov/ncbddd/fas/default.htm

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http://www.nofas.org/

http://www.fascets.org/

http://www.fascenter.samhsa.gov/

http://www.acbr.com/fas/

http://www.thearc.org/fetalalcohol.html

http://www.cdc.gov/ncbddd/fas/default.htm

Indiana ResourcesIndiana Resources

• The Fetal Alcohol Syndrome Center of Indiana - Indiana University Medial Center

975 West Walnut Street, IB 130Indianapolis, IN 46202Phone: 317-274-2450 Fax: 317-274-2387 Provides diagnosis, education and patient advocacy for those

affected with prenatal alcohol exposure.

• CNS - Center for Neurobehavioral Sciences3010 E. StateFt. Wayne, IN 46805Phone: 260-471-2300 Toll Free: 1-800-901-8416Provides 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.

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Indiana ResourcesIndiana Resources

• Indiana Department of Health - IN Perinatal Network (IPN), Prenatal Substance Use Prevention Program (PSUPP)

2 N Meridian Street; Indianapolis, IN 46204Phone: 317-233-1269 Fax: 317-233-1300

Referrals and early intervention for substance-using pregnant

women. Training for professionals.

• Indiana Protection and Advocacy Services4701 N Keystone Avenue, Suite 222, Indianapolis, IN 46205 Phone: 800-622-4845 or 317-722-5555

Fax: 317-722-5564Statewide agency for persons with developmental

disabilities.www.in.gov/ipas

FASD

http://www.in.gov/ipas

www.health.state.mn.us/fas/catalog

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 MedicineIndiana State Department of HealthIndiana Department of EducationUniversity of Indianapolis

working to prevent fetal alcohol spectrum disorders through high school and middle school curricula...

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