Fetal Alcohol Spectrum Disorders FASD: Diagnosis, Effects, Intervention, Family Support

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Fetal Alcohol Spectrum Disorders (FASD)
Diagnosis, Effects, Intervention, Family Support

• Kathryn Shea, MSW, LCSW
• The Florida Center for Child and Family
  Development
• Sarasota, FL
• kathryn.shea_at_thefloridacenter.org

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Fetal Alcohol Spectrum Disorders

• History of references to pre-natal alcohol
  effects on fetus
• Biblical reference
• Behold, thou shalt conceive and bear a son and
  now drink no wine or strong drinks. - Judges
  13.7
• Foolish, drunken and harebrained women most
  often bring forth children like unto themselves,
  morose and languid. -Aristotle

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Gin Lane, England, 1750
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Fetal Alcohol Spectrum Disorders

• History of references to pre-natal alcohol
  effects on fetus
• Sullivan, England, 1899
• 120 FEMALE Drunkards In Liverpool prison
  compared to sober relatives
• Found perinatal infant mortality 2½ times
  higher in offspring of female drunkards

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Fetal Alcohol Spectrum Disorders

• History of references to pre-natal alcohol
  effects on fetus
• Lemoine, 1968 in France published first study on
  observable effects in infants born to women with
  history of alcoholism. Included many of the
  effects documented in first published study in
  1973 by Jones Smith, et al
• 1973- First published study of effects to
  fetus/infant of pre-natal exposure to alcohol.
  Jones Smith, et. al

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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
  womans drinking alcoholic beverages while she is
  pregnant. In fact, Fetal Alcohol Syndrome remains
  the most common cause of diagnosable mental
  retardation in the United States.

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What are Fetal Alcohol Spectrum Disorders ?

• 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.

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Ten Facts about FAS/D

• Of all abused substances, alcohol causes the most
  serious effects resulting in permanent brain
  damage
• FAS is the leading known cause of mental
  retardation in western civilization
• Over 50 percent of women of childbearing age
  drink alcohol only 39 percent know about FAS

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Ten Facts, contd

• Approximately 20 percent of women continue to
  drink after learning they are pregnant
• Binge and frequent drinking during pregnancy has
  not declined in recent years
• Some of the women at highest risk of drinking
  during pregnancy are those who are single, and
  those who smoke

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Ten Facts, contd

• Each year in the United States, between 35,000
  and 40,000 babies are born with FASD
• FAS affects one out of 1000 babies, making it the
  leading cause of brain damage
• 15 year-old children with FASD can have the
  social maturity of a 6 year-old
• Fewer than 10 percent of individuals with FAS are
  able to take care of themselves and live on their
  own

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Fetal Alcohol Syndrome

• Specific pattern of facial features
• Pre- and/or postnatal growth deficiency
• Evidence of central nervous system dysfunction
• With/without history of prenatal exposure to
  alcohol

Photo courtesy of Teresa Kellerman
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Facial Features
Source http//www.depts.washington.edu/fasdpn/fac
e.html
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Facial Features, contd
Source http//www.depts.washington.edu/fasdpn/fac
e.html
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Facial Features, contd
Source http//www.depts.washington.edu/fasdpn/fac
e.html
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FAS Physical Abnormalities

• 98 under normal height and weight
• 95 Facial anomalies
• 89 Mental and Motor Retardation
• 84 Micro encephalic
• 80 Speech impediments
• 72 Hyperactive
• 58 Slack muscles
• 51 Shortened and bent little finger
• 46 Genital deformities
• 44 Spinal dimple
• 35 Hair growth on back of neck
• 30 Pigeon Chest
• 29 Heart defects

• 25 Eye problems
• 20 Hearing problems
• 20 Swallowing/Feeding
• 20 Autism/Aggressive/Social Problems
• 16 Small teeth
• 16 Bent crooked little finger
• 13 Underdeveloped fingers
• 12 Hernia
• 10 Kidney defects
• 9 Hip deformities
• 7 Concave chest
• 7 Cleft palate

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.
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The Effect of Alcohol on Your Babys 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 babys brain may be smaller, structurally or
  functionally damaged, with right/left hemisphere
  abnormalities.

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Brain Damage Resulting from Prenatal Alcohol
photo Clarren, 1986
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Corpus Callosum Abnormalities
Mattson, et al., 1994 Mattson Riley, 1995
Riley et al.,1995
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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
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How FASD Affects Sensory Integration

• Many individuals with FASD have difficulty
  processing and organizing sensory information
  they receive from their own bodies and the
  outside world

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How FASD affects Sensory Integration

• 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

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How FASD affects Sensory Integration

• 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

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How FASD affects Sensory Integration

• 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

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Normal Sensory Integration
source Dorothy Schwab
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Disordered Sensory Integration
source Dorothy Schwab
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Results of Poor Sensory Processing

• Emotional liability, irritability/instability
• Sensory Overload (Shutdown or Disorganized
  Behavior)
• Learning problems
• Behavior problems
• Poor self-esteem
• Perceptual problems
• Difficulty in interpersonal relationships

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Fetal Alcohol Spectrum Disorders
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Components of the Central Nervous System
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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

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Top Down, Bottom Up Approach
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Fetal Alcohol Spectrum Disorders

• Clinical Interventions
• Physical Brain Gym, Yoga, Relaxation
  Techniques, Deep Breathing, Sensory Activities,
  Obstacle Course
• Affective DIR based therapy, role playing,
  social stories, feeling collages, 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

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Pharmacological Interventions and Children with
FASD

• Clinical Practice Guidelines
• Medication represents only one aspect of a
  treatment program. (Counseling, family
  support/respite, case management, vocational
  counseling, developmental therapies, should all
  be utilized simultaneously.)
• Combination of medications may be needed to for
  multiple psychopathologies
• Due to the organic brain damage in FASD,
  individuals may be sensitive to medications/doses

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Pharmacological Interventions and Children with
FASD

• Clinical Practice Guidelines (continued)
• Do not use a second drug to treat side effects of
  first. Do not start more than one drug at a time
  or add another until results of first are known.
• Close medical follow up is required due to
  complexity of medical, neurological, psychiatric
  problems/co-morbidities
• (Kieran OMalley, M.D. Randi Hagerman, M.D.,
  1998)

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Fetal Alcohol Spectrum Disorders

• Universal Protective Factors
• Living in a stable and nurturant 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

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Fetal Alcohol Spectrum Disorders

• Experiencing a good quality home (10 or more of
  12 good qualities) from age 8 to 12 years
• Having applied for and been found eligible for
  DDD services
• Having a diagnosis of FAS (rather than FAE)
• Having basic needs met for at least 13 of life.
  
• SOURCE Streissguth, 1996

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Fetal Alcohol Spectrum Disorders

• Family Support
• FAS-FRI- Family Resource Institute found
  families identified respite as the number 1 need,
  followed by integration/coordination of service
  providers, training/education of school personnel
  and DJJ system workers
• Families need a family advocate/navigator to
  assist them in obtaining needed services model
  similar to mental health model for children with
  serious emotional disturbance

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Summary

• Fetal Alcohol Syndrome is a devastating
  developmental disorder that affects children born
  to women who drink alcohol during pregnancy.
• Although FAS is entirely preventable, children
  continue to be born to mothers who drink.
• Results of drinking during pregnancy affect the
  baby, the family, and society.
• The costs of FAS and FAE are tremendous, both
  personally and financially.
• Ed Riley

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Florida FAS Interagency Action Group Strategic
Plan

• Priority Areas
• Level 1 Prevention (Healthy People 2000
  Reduce the Occurrence of FAS)
• Level 2 Identification and Assessment
• Level 3 Intervention
• Level 4 Life Support/Extended Services

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SAMHSA FASD Center for Excellence Legislative
Mandates

• Study innovative clinical interventions.
• Provide technical assistance to communities.
• Provide training on FASD.
• Develop innovative prevention techniques.
• Respond to recommendations by the National Task
  Force on Fetal Alcohol Syndrome and the Secretary
  of Health and Human Services.

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SAMHSA FASD Center for ExcellenceInformation
Resource Center

• Accessible by phone, mail, or e-mail and through
  the Web site
• 866-STOPFAS (866-786-7327) fasdcenter.samhsa.gov
• Service in English and Spanish
• Responds to questions from families, providers,
  government personnel, academics, researchers,
  other interested persons
• Connects people with resources

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SAMHSA Web Site fasdcenter.samhsa.gov FASD
Center for Excellence

• FASD The Basics slide show and notes Searchable
  database of publications and research on FASD
• Downloadable information
• Fact sheets, articles posters office cards
• Request form for training and technical
  assistance
• Links to national and other FASD web sites
• Downloadable
• In the near future
• FASD 101 online course

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Publications and Products
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Fetal Alcohol Spectrum Disorders

• The Florida Center for Child and Family
  Development, Sarasota, FL
• Legislative dollars (280,000) awarded in 2005 to
  establish first Fetal Alcohol Diagnostic Clinic
  in Florida Opened in July, 2005
• Can provide 40 statewide assessments
• Intervention services for 25 children/families in
  Sarasota County
• Statewide training to parents/professionals

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FAS Only the tip of the iceberg

• Fetal alcohol syndrome
• Fetal alcohol effects
• Clinical suspect but appear normal
• Normal, but never reach their potential

Adapted from Streissguth
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