Born Drunk, Living with Fetal Alcohol Spectrum Disorders FASD

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Born Drunk, Living with Fetal Alcohol Spectrum
Disorders (FASD)

• Susan Rose
• Executive Director
  of the Fetal Alcohol Support Network of
• New York City and
• Long Island
  www.fassn.org
• 718-279-1173
• Dianne OConnor
• NYS OASAS

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Course Objectives

• Part 1 What is FASD?
• Participants will
• Identify the difference between FAS and FASD
• Identify the basic diagnostic criteria for
  identifying an FAS/D

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Course ObjectivesThe ultimate GOALto prevent
alcohol exposed births
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Ellen and MalcolmVOL 181, No.2.National
Geographic THE WORLD AS THEY SEE IT Text and
photographs by GEORGE STEINMETZ
Ellen ODonovan (pseudonym) was losing her fight
against alcoholism when she discovered she was
pregnant. Months later her son was born with
fetal alcohol syndrome, and his battles began.
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Fetal Alcohol Spectrum Disorders (FASD)

• Umbrella term describing
• the range of effects that can
• occur in an individual whose
• mother drank alcohol during
• pregnancy
• May include physical, mental,
• behavioral, and/or learning
• disabilities with possible lifelong
  implications
• Not a clinical diagnosis

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Terminology

• Fetal Alcohol Syndrome (FAS)
• Fetal Alcohol Effects (FAE)
• Alcohol-related birth defects (ARBD)
• Alcohol-related neurodevelopmental disorder
  (ARND)
• Partial FAS (pFAS)

Pregnancy
Alcohol

May result in
FASD
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Fetal Alcohol Syndrome is only the tip of the
iceberg.

• For every child born with full FAS, there are
  FIVE children born with invisible yet serious
  Fetal Alcohol Effects (FAE).
• Together FAS and FASD make up what is called
  Fetal Alcohol Spectrum Disorders (FASD).

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Number of People With an FASD(May and Gossage,
2001 http//www.niaaa.nih.gov/publications/arh25
-3/159-167.htm).

• No one knows for certain how many individuals are
  born each year with an FASD or living with an
  FASD.
• It is estimated that 1 in every 1,000 births has
  FAS.
• It is estimated that 1 in every 100 births has an
  FASD.

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Ellen and Malcolm

• When Malcolm was born, I thought my heart would
  break, she said. And, oh my God, the guiltI
  didnt even know I was pregnant. Thats the
  tragedy of it.

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FASD Facts

• 100 percent preventable
• Leading known cause of preventable mental
  retardation
• Not caused on purpose
• Can occur anywhere and anytime pregnant women
  drink
• Not caused by biologic fathers alcohol use

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What About the Guys?
Can a fathers drinking cause FASD?
NO

• A fathers drinking during or before pregnancy
  does not directly cause FASD.
• However, problems have been found in offspring of
  males who abuse alcohol.
• A womans drinking behavior is greatly influenced
  by the drinking behavior of her partner, family,
  and friends.

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Cause of FASD

• The sole cause of FASD is women drinking
  alcoholic beverages during pregnancy.
• Alcohol is a teratogen.
• (dose, timing, maternal and fetal status)

Of all the substances of abuse (including
cocaine, heroin, and marijuana), alcohol produces
by far the most serious neurobehavioral effects
in the fetus. IOM Report to Congress, 1996
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FASD and Alcohol

• All alcoholic beverages are harmful.
• Binge drinking is especially harmful.
• (Binge 4 or more drinks on one occasion for
  a women, 5 or more for a man)
• There is no proven safe amount of alcohol use
  during pregnancy.

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Ellen and Malcolm

• Little is known about the thresholds of alcohol
  that cause FAS. Genetics may also be a
  factor. Even with fraternal twins one might have
  severe FAS, while the other is mildly
  affected. Not all mothers who drink have FAS
  babies. Some doctors believe that any alcohol
  puts the baby at risk, while nearly all agree
  that binge drinking is perilous, especially
  during the first 12 weeks, when signs of
  pregnancy are few.

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A Variable Gestational Timing Coles C. Critical
periods for prenatal alcohol exposure. Alcohol
Health Res World. 19941822-29.) Dark bars-most
sensitive periods of development Lighter bars
represents periods of development during which
psychological defects and minor structural
abnormalities would occur.
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Identifying FAS What to Look For

• Growth deficiency
• in height and/or weight
• Specific differences in
• facial characteristics
• Damage to the central
• nervous system
• Evidence of mother drinking while pregnant

Photo courtesy of St. Louis Arc
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Stunted Growth in a Child
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Facial Characteristics FAS
Panel Streissguth, 1994, 1996
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FacialChangesinFAS
Birth
8 months old
4 years old
14 years old
Short palpebral fissures Indistinct
philtrum Thin upper lip
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Identifying FAS What to Look For

• Growth deficiency
• in height and/or weight
• Specific differences in
• facial characteristics
• Damage to the central
• nervous system
• Evidence of mother drinking while pregnant

Photo courtesy of St. Louis Arc
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FASD and the Brain

• Prenatal alcohol exposure causes brain damage.
• Effects of FASD
• last a lifetime.
• People with an FASD can grow, improve, and
  function well in life with proper support.

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FAS and the Brain
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FAS and the Brain
A. Magnetic resonance imaging showing the side
view of a 14-year-old control subject with a
normal corpus callosum B. 12-year-old with FAS
and a thin corpus callosum C. 14-year-old with
FAS and agenesis (absence due to abnormal
development) of the corpus callosum. Source
Mattson, S.N. Jernigan, T.L. and Riley, E.P.
1994. MRI and prenatal alcohol exposure Images
provide insight into FAS. Alcohol Health
Research World 18(1)4952.
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Neurodevelopental disorder(This is not an
all-inclusive list of conditions. More than one
may be identified, but not all conditions must be
present)

• Head circumference Intellectual impairment
• Memory problems Delayed development
• Attachment concerns ADD/or hyperactivity

• Impaired motor skills
• Problems with reasoning
• Learning disabilities problems with
  judgment
• Inability to see
• consequences of actions

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(Neuro) Behavioral Outcomes and Functional
Deficits Examined in FASD

• Motor skills
• Visual/spatial skills
• Adaptive Behavior
• Social Behavior
• Mental Health/Behavioral Disorders
• Working Memory
• Impatient

• General Cognitive/Learning Skills (IQ)
• Executive Functioning Skills
• Attentional regulation
• Memory,Planning and organization
• Academic Achievement
• Math

Claire Coles, PhD, 2005
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Documentation and confirmation of prenatal
alcohol exposure can be extremely challenging.
For birth mothers, admission of alcohol use
during pregnancy can be very stigmatizing.

• Confirmed prenatal alcohol exposure
• Unknown prenatal alcohol exposure

http//www.cdc.gov/ncbddd/fas/documents/FAS_guidel
ines_accessible.pdf
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General Issues in FASD

• Often undiagnosed, especially in adolescents,
  adults, and persons without facial features of
  FAS
• More difficulties seen in those without the
  facial features and with higher IQs
• Adaptive functioning significantly more impaired
  than IQ

www.fassn.org
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Common disorders identified with FAS/ARND

• Aspergers Disorder
• ADHD
• Autistic Disorder
• Borderline Personality disorder
• Conduct Disorder

• Depression
• Learning Disability
• ODD
• Post Traumatic Stress
• Expressive-Receptive Language Disorder

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Overall Difficulties for Persons With an ARND

• Taking in information
• Storing information
• Recalling information when necessary
• Using information appropriately in a
  specific situation

Information
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Primary Disabilities in Persons With
FASDUnderstanding the Occurrence of Secondary
Disabilities in Clients with FAS and
FAE,,Streissguth, 1996

• General intelligence
• Mastery of reading, spelling, and arithmetic
• Level of adaptive functioning more significantly
  impaired than IQ

www.mapcl.org/Jobs4.html
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Secondary Disabilities in Persons With FASD

• Mental health issues 94
• Dependent living 83
• Problems with employment 79
• Trouble with the law 60
• Confinement 50
• Inappropriate sexual behavior 45
• Disrupted school experience 43
• Alcohol and drug problems 35

Streissguth, et al. (1996)
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Protective Factors Against Secondary
DisabilitiesUnderstanding the Occurrence of
Secondary Disabilities in Clients with FAS and
FAE,,Streissguth, 1996

• Stable, good quality home
• Not having frequent changes of homes
• Not being a victim of abuse, neglect, or violence
• Receiving developmental disabilities services
• Diagnosed before the age of 6

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Infancy and Early Childhood Tools for Success,
MOFAS, 2006

• Overly sensitive or under- responsive to
  stimulation
• Lack of stranger anxiety
• Possible attachment difficulties
• Severe temper tantrums

• Fitful sleep
• patterns
• Poor suck reflex
• Poor muscle tone,
• which can delay
• walking and toilet
• training
• Small for height
• and weight

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Middle Childhood Tools for Success, MOFAS, 2006

• Possible hyperactivity
• Poor memory
• Lack of impulse control
• Poor social skills
• Failure to understand consequences
• Very concrete thinking
• Onset of academic problems

www.fassn.org
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Adolescence Tools for Success, MOFAS, 2006

• Less obvious FAS facial features
• Academic plateau
• Poor judgment and impulsivity
• Depression, anxiety, and/or mood swings
• Alcohol/drug use
• High risk of pregnancy
• May become slightly obesity
• May function better in the evening

www.fassn.org
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Adolescence Sharing StoriesFinding Hope,
CDC/The Arc 2003

• Increased need for abstract thinking
• Increased desire for independence focus on
  adolescents safety
• Unrealistic expectations of others
• Increased need to problem-solve and use good
  judgment
• Victimization
• Socially inappropriate behavior
• Lying, stealing, antisocial behavior

www.fassn.org
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Part 2

• Program issues when working with an individual
  with an FASD
• Possible strategies for better outcomes

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Issues in Child Welfare for Parents With an FASD

• They appear to be uninterested or neglectful
• They dont show up for their appointments or
  scheduled visits on time or at the right time
• They dont complete treatment
• They dont go to meetings every day and get a
  signed statement that they were there
• They dont call their children at the designated
  times

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Typical Treatments Must Often Be Adapted for
Those With an FASD

• For those with a fetal alcohol spectrum disorder,
  prevention interventions must be adapted due to
• Difficulty with verbal receptive language
  processing
• Difficulty with multiple directions and multiple
  tasks
• Difficulty processing information on ones own
• Difficulty following through on ones own
• Modeling the behavior of those around them
• Difficulty in group situations
• Do better one-to-one

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Expectations of Consequence-Based Behavior
Modification
May Not Work!

• Hear and understand consequences
• Link consequence with behavior
• Apply to future behaviors
• Predict outcomes
• Retrieve previous information
• Recall all possible consequences
• Integrate the recollections and predictions
  automatically and adjust behavior accordingly

Tools for Success, MOFAS, 2006
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So, What Does Work?

• Experience is a good teacher.
• Base practices on
• the individuals needs.
• Plan for success.

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Successful Behavior Management

• Is not consequence-based
• Works as well as consequence-based methods
• Effects changes in the relationship between the
  teacher and the learner

• Understands the behavior
• Is different than weve practiced
• Anticipates problems
• Constructs rules that work
• Dont criticize, reward good behavior

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Constructing Program Rules

• Positive terms
• Clear and concise
• Written down

• Explained
• Based on input from staff or youth
• Few in number
• Simple
• Have staff commitment

Source Roush, 1996
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Strategy Direct Therapeutic Intervention

• PRINCIPLES
• Accommodation vs. Cure Cant cure the existing
  brain damage
• Change the environment, not the person (physical
  environment, attitudes)
• Individualize Base intervention on the persons
  unique neuropsychological and health profile
• Adapt interventions Alter existing
  interventions based on individuals learning
  style, memory problems, attention deficits, etc.
  
• Maintain intervention Consistency
• Involve others

Therese Grant, PhD, 2006
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Strategy Comprehensive Prevention Intervention
Therese Grant, PhD, 2006

• PRINCIPLES
• Multi-systemic (medical care mental health
  school
• social service vocational training agency
  social
• services family church)
• Multi-modal (individual therapy family therapy
  medication vocational training/job coaching
  case management support groups)
• Individualized (based on comprehensive
  assessment)
• Life-span perspective (sustain the support)
• Family-based (involve caregivers/advocates)

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Strategies When TreatingClients with FASD

• Use short sentences, concrete examples, and be
  careful using analogies
• Present information using multiple modes
• Simple step-by-step instructions (written and/or
  with pictures)
• Role-playing
• Ask patient to demonstrate skills (dont rely
  solely on verbal responses)
• Revisit important points during each session

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Strategies for Improving Outcomes for Individuals
With an FASD

• Be aware of language used
• Use person first language
• Use Literal Language
• Do not use metaphors or similes
• Do not use idiomatic expressions
• Think about how what you say could be
  
• misinterpreted

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Part 3

• Primary disabilities and strategies for working
  with an individual with an FASD

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Primary Disabilities in Persons With an FASD

• Lower IQ
• Impaired ability in reading,
  spelling, and arithmetic
• Lower level of adaptive functioning
  more significantly impaired than IQ
• Cannot Entertain themselves
• Have trouble changing tasks
• Do not accurately pick up on social cues

Age 21 Graduation from high school, Photo
courtesy of www.fasstar.com
Streissguth, et al. (1996)
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Comparing FASD, ADHD and Oppositional Defiant
Disorder
Ellen Lally, Ed.D LCSW, Dan Dubovsky, MSW 2005
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Comparing FASD, Adolescent Depression and
Adolescent Bipolar Disorder
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Typical Difficulties for Persons With an FASD,
Self-Esteem and Personal Issues

• Function unevenly in school, work, and
  development
• Experience multiple losses
• Are seen as lazy, uncooperative, and unmotivated
• Have hygiene problems

www.fassn.org
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Typical Difficulties for Persons With an FASD,
Information Processing

• Say they understand when they do not
• Have verbal expressive skills that often exceed
  their level of understanding
• Misinterpret others words, actions, or body
  movements
• Have trouble following multiple directions

www.fassn.org
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Typical Difficulties for Persons With an FASD,
Sensory Integration

• Are overly sensitive to sensory input
• Upset by bright lights or loud noises
• Annoyed by tags in shirts or seams in socks
• Bothered by certain textures of food
• Have problems sensing where their body is in
  space (i.e., clumsy)

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Typical Difficulties for Persons With an FASD

• Do not complete tasks or chores and may appear to
  be oppositional
• Have trouble determining what to do in a given
  situation
• Dont ask questions because they want to fit in
• Great difficulty waking up in the morning
• Other difficulties handling money and time
  concepts, remembering appointments, understanding
  cause and effect, following rules

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Typical Difficulties for Persons With an FASD,
Executive Function Deficits

• Have trouble with time
• Have trouble with money
• Give in to peer pressure, naïve and gullible

• Go with strangers
• Repeatedly break the rules
• (frequently do not respond to point, level,
  or sticker systems)
• Do not learn from mistakes or natural
  consequences

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Strategies To Improve Self-Esteem and Personal
issues

• Use person-first language (e.g., child with
  FAS, not FAS kid).
• Do not isolate the person.
• Address issues of loss and grief.
• Do not blame people for what they cannot do.
• Set the person up to succeed.

Congratulations
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Using Concrete Language

• Concrete language can be measured or observed.
  Instead of saying, Be a good girl use Sit
  quietly and say thank you.
• Be very directive and dont give too many
  choices. Speak slowly and be aware of how much
  information will lead to overload.
• Remember to review, re-teach, and remind
• Use visual supports
• May benefit from computer-based learning programs
  because they are repetitive, visual, and provide
  immediate feedback and a hands-on learning
  experience.

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Strategies To Improve Memory Issues

• Provide one direction or rule at a
  time and review rules regularly.
• Use a lot of repetition, repetition, repetition.
• Then, when they forgetrepetition, repetition,
  repetition!

www.fassn.org
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Strategies To Improve Information Processing

• Check for understanding.
• Use literal language.
• FASD individuals are concrete learners. They
  also can learn kinesthetically.
• Teach the use of calculators and computers.
• Look for misinterpretations of words or actions
  and discuss them when they occur.
• Do not use talk-therapy. Use reality check.
  If an individual with FASD does something wrong
  ask, Lets think of other ways in which this
  situation could have been handled. Then discuss
  those options. Role play!

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Sensory Integration Dysfunction

• Sensory integration dysfunction the inability to
  respond appropriately to ordinary experiences
  occurs when the brain processes sensations
  inefficiently.
• Incidental learning happens from our environment.

www.fassn.org
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Strategies To Improve Outcomes for Individuals
With an ARND

• Strategies for Sensory Integration Issues
• Simplify the individuals
  environment.
• Provide a lot of one-to-one physical presence.
• Sensory triggers.
• Take steps to avoid

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ADHD vs. FAS

• ADHD
• Problem focusing attention
• Problem inhibiting impulsive behavior
• High activity level and behavior problems

• FAS
• Problems learning information
• Slower processing
• Less efficient processing of visual information
• Problems with flexibility in problem solving

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Self Regulation Strategies FASD-Strategies, Not
Solutions, Reg6. FASD Child Youth
Sub-Committee, Canada

• Comfort Corners Safe Place
• Bean bag, old soft quilt,
• dark sunglasses,
• headphones w/ serenity
• tapes, quiet, weighted
• blanket, hammock, bucket
• of beans
• Teaches- Recognizing internal feelings
• Allows person to de-stimulate and self soothe

www.fassn.org
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Possible Adolescence ProblemsTools for Success,
MOFAS, 2006

• Shoplifting
• Sex offenses
• Inability to anticipate consequences
• (Boys get locked up.girls get knocked up)

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Individuals With an FASD Are More Likely To Be
Arrested

• Lack avoidance strategies
• Scapegoats
• Defiant and uncooperative
• No ability to predict consequences
• No stranger danger

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Competency and FASD Tools for Success, MOFAS,
2006

• Individuals with an FASD may sound or look
  more competent than they are.
• They may function at a level much younger than
  their chronological age.
• Legal counsel representing individuals with an
  FASD should understand how FASD might affect a
  youths competency.

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8 Magic Keys for Successful Interventions

• Be concrete
• Be consistent
• Use repetition
• Use routines
• Keep it simple
• Be specific
• Provide structure
• Provide supervision

Evensen Lutke, (1997)
http//www.fassn.org/
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Services/Supports That May Assist Children with
FASDSharing StoriesFinding Hope, CDC/The Arc
2003

• Family support, including respite care
• Child care
• Education early intervention, preschool, school
  aged special education
• Vocational transition services
• Other basic services

http//www.fassn.org/photos.htm
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On-Line Support for Parents

• FASSN
• Faslink
• Fasadopt
• FASForum
• Family Village
• MUMS Mothers United for Moral Support

www.fasiceberg.org/.../Vol13Num3_Oct2003.htm
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State Supports

• NY State Office of Alcoholism and Substance Abuse
  
• Services
• NY State Office of Mental Retardation and
• Developmental Disabilities
• NY State Office of Children and Family Services
• NY State Office of Mental Health
• NY State Department of Education

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Course ObjectivesThe ultimate GOALto prevent
alcohol exposed births
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FASD Resources Web Links

• NYS Office of Alcoholism Substance Abuse
  Services (NYS OASAS)
• www.oasas.state.ny.us/fasd
• SAMHSA FASD Center for Excellence
  www.fascenter.samsha.gov
• Centers for Disease Control and Prevention FAS
  Prevention Team
• www.cdc.gov/ncbddd/fas
• National Institute on Alcohol Abuse and
  Alcoholism (NIAAA)
• www,niaaa.nih.gov/
• National Organization on Fetal Alcohol Syndrome
  (NOFAS)
• www.nofas.org
• The Fetal Alcohol Syndrome Support Network of New
  York City and Long Island (FASSN)
• www.fassn.org

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Recommended books to read about FASD

• Fetal Alcohol Syndrome, by Ann Streissguth
• Damaged Angels, by Bonnie Buxton-Amazon.com
  (Canada)
• The Best I Can Be, by Jodee Liz Kulp
• OUR FAScinating Journey, by Jodee Kulp
• Fetal Alcohol Syndrome (NOFAS), by Kathleen
  Mitchell -call [phone] for a copy or go to
  www.nofas.org
• Fantastic Antone Succeeds
• Fantastic Antone Grows Up
• Go to Amazon.com for most of these books