Identifying and Preventing Fetal Alcohol Spectrum Disorders (FASD):

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Identifying and Preventing Fetal Alcohol Spectrum
Disorders (FASD) A Hidden Cause of Relapse in
Women As Well As Behavioral and Cognitive
Problems in Their Offspring Kathleen Tavenner
Mitchell, MHS, LCADC Vice President National
Organization on Fetal Alcohol Syndrome
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Prenatal Alcohol Exposure can cause Lifelong
Brain Damage

• FASD is the leading known cause of preventable
  mental retardation and is a leading cause of
  birth defects and learning and behavioral
  disorders

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COMPARISON OF CONGENTIAL EFFECTS FROM ALCOHOL AND
DRUGS
Adapted from Morris et al,
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Fetal Alcohol Spectrum Disorders
FAS ARND PFAS
Fetal Alcohol Syndrome
Partial FAS
Alcohol-Related Neurodevelomental Disorder
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NOFAS Vision

• The vision of the National Organization on Fetal
  Alcohol Syndrome (NOFAS) is a global community
  free of alcohol-exposed pregnancies and a society
  supportive of individuals already living with
  Fetal Alcohol Spectrum Disorders (FASD)

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What Does NOFAS Provide?

• Advocacy
• Government Affairs
• Advisory
• Constituent Services
• Affiliate Network
• Birth Mom Network
• Support Groups
• Consultation
• Referral

• Public Awareness
• Media Outreach
• PSA
• Awareness Campaigns
• Youth Education
• Professional Education
• Curricula
• Provider training

www.nofas.org
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FASD AN UNEXAMINED CAUSE OF ADDICTION RELAPSE

• Women that have used during pregnancy have severe
  guilt and shame that needs to be addressed in
  order to prevent relapse
• Women that have children with unidentified FASD
  are at high risk for relapse due to the behaviors
  of their children and the belief that they are
  poor parents
• Women that were exposed to alcohol prenatally may
  have FASD putting them at high risk for relapse

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FASD Prevention and Intervention Should be a
PRIORITY in Addiction Treatment

• Early identification of children with FASD can
  reduce secondary disabilities and improve
  outcomes for future success
• Women with addictive diseases are at very high
  risk for having children with FASD
• Women who drank during one pregnancy are likely
  to drink during all pregnancies
• FASD is a preventable disorder that has lifelong
  implications!!!

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Increased sibling mortality in children with FAS

• Study compared the rate of all causes of
  mortality in siblings of children diagnosed with
  FAS with the siblings of matched controls
• The siblings of children with FAS had increased
  mortality (11.4) compared with matched controls
  (2.0), a 530 increase in mortality
• Siblings of children with FAS had increased risk
  of death due to infectious illness and SIDS
• A diagnosis of FAS is an important risk marker
  for mortality in siblings even if they do not
  have FAS
• Maternal alcoholism appears to be a useful risk
  marker for increased mortality risk in diagnosed
  cases and their siblings
• Authors Burd L. Klug M. Martsolf 2004

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Substance Use in Pregnancy

• More than 130,000 pregnant women per year in the
  US consume alcohol at risk levels

• 1 in 30 women who know they are pregnant report
  risk drinking

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16-to-24-year-old American Women and Alcohol

• After drinking alcohol
• One in five have had sex that they regretted
• One in 10 have been unable to remember if they
  had sex the night before
• One in seven women have had unprotected sex and
  engage in risk drinking
• Birth defects associated with alcohol exposure
  can occur before a woman knows she is pregnant
• Nearly 85 of teen pregnancies are unplanned

National Clearinghouse for Alcohol and Drug
Information
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Social Differences

• Physicians Enable
• Frequent misdiagnosis
• Less likely to be screened for alcohol problems
• CASA reports that only 6 of physicians routinely
  talk to women about alcohol use
• Over-prescribing, or inappropriate prescribing
  addictive substances

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Is Alcoholism Really a Disease?

• Alcoholism is defined as a primary, chronic
  disease with genetic, psychosocial, and
  environmental factors influencing its development
  and manifestations

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Progression of Alcoholism
Stage 1 Tolerance Stage 2 Physical Dependency Stage 3 Major Organ Change
high tolerance with occasional use increased tolerance/possible a.m. use possible daily or maintenance use (reduced tolerance)
occasional hangovers withdrawal headaches/nausea (anorexia, high BP, loss of concentration, weakness) migraines Vomiting rapid pulse, BP disorientation
disrupted sleep patterns sleeplessness insomnia
colds/infections disease pathology developing major organ damage
irritability-mood swings-mild depression-isolation MH diagnosis (depression, anxiety, panic) institutions and rx suicidal ideation or attempts K. Mitchell, 2004
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Stage 1 Tolerance Stage 2 Physical Dependency Stage 3 Major Organ Change
memories of how nice use was preoccupation/ craving use despite consequences
one-two gateway drugs variety of drug use multiple drug addictions
mild tremors intentional tremors seizures or D.Ts
sexual pleasure sexual problems impotence
family problems school work problems loss of family, job school
trouble with the law (close calls) DWI-DUI / possession incarcerations K. Mitchell, 2004
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• Myth
• An addict will not go into treatment until they
  have hit bottom
• Truth
• An addict lives on an emotional bottom, we just
  need to take the time to tell them

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Our Families Journey Through Addiction, Denial
and Recovery
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1977Karli, Danny and ErinA Happy Little Hippy
Family
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Karli age 10 (diagnosed with cerebral palsy)

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Our Family Process

• Years of frustration and misdiagnosis
• Years of believing that Karli was not trying her
  best
• Believing that Karli would grow out of it
• Received Diagnosis of FAS for Karli (16 year of
  age)

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Acceptance Phase

• Survival Do or Die!
• Catapulted into Process of Recovery

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Karli at 16 Receives Diagnosis of FASNew house
rulesNo discussing what Karli cannot do!The
focus changed to what Karli could do

• Great artist!
• Friendly to everyone
• Wants to be helpful
• Everyone likes Karli
• 100 pure of heart, Holy
• Would not hurt another person-ever!
• Really wants your approval
• Great with the elderly and individuals with
  severe handicapping conditions

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Karli possessed a natural ability for spiritual
simplicity!

• Maybe she was here to teach us??
• The glass was now half full!!

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We are not human beings having a spiritual
experience, rather spiritual beings having a
human experience. Pierre Teihard de Chardin
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Individuals with FASD make Powerful Advocates!
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• 2 Things Necessary for Life
• water
• women

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Screen All Women of Childbearing Age for Alcohol
Use

• Be conversational during screening
• Be non-judgmental
• Listen to her, both verbal and non-verbal
• Stay positive-refrain from negative comments or
  reactions
• Focus on her health and her babies
• Consider issues such as illiteracy, poverty or
  abuse
• Compliment her

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Days Study Light-to-Moderate Prenatal Alcohol
Exposure Can Negatively Effect Cognitive
Abilities of Child

• Examined prenatal substance use among 611
  mother-child pairs in a prenatal clinic from 1983
  to 1985
• Children examined several times throughout the
  childs early life, at age 10 cognitive ability
  was assessed
• The study noted that even light to moderate
  drinking during pregnancy can affect IQ, and that
  the effects of prenatal alcohol exposure on IQ
  were worse for children exposed to alcohol
  through the second trimester
• IQ is a measure of a childs ability to learn and
  survive in his or her own environment-ideally
  predicting the childs abilities and potential
  for success in school and everyday activities

• Willford, Jennifer A., Sharon L. Leech, and Nancy
  L. Day. "Moderate Prenatal Alcohol Exposure and
  Cognitive Status of Children At Age 10."
  Alcoholism Clinical and Experimental Research 30
  (2006) 1051-1059.

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Opportunity

• Pregnancy is an opportunity for change
• Women who are pregnant are more receptive to
  intervention programs and treatment than women
  who are not currently pregnant

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Discuss Birth Experiences with Women

• Red Flags
• Two or more miscarriages?
• Stillbirths?
• Infant/child deaths (SIDS)?
• Children with LD, ADHD, MH or behavioral
  disorders?
• Children diagnosed with FASD?
• Positive response to any of the above questions
  should warrant a screening of all children for
  possible FASD (where substance use is known or
  suspected)
• 
  
• 
  
  
  K Mitchell,
  2004

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Women identify the top three barriers to
addiction treatment

• 39 said the inability to admit the problem is
  severe enough to warrant treatment (denial)
• 32 said the lack of emotional support for
  treatment from family members
• 28 inability to provide adequate care for
  children

2002 Caron Foundation www.womenhealing.org
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Locate Treatment that provides Feminine Focused
Recovery

• Address the unthinkable
• Sexuality
• Biological differences
• Menstruation
• Abuse
• Substance use during pregnancy and possible
  consequences
• Secrets
• Desires, dreams and fantasies
• Basic needs transportation, childcare, etc.

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Recovery begins when we
Change thinking From linear to circular
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Characteristics of Chemically Dependent Families

• Family rules are rigid or non-existent
• Inconsistent, arbitrary, irrational
• Stress related illness is common
• Colitis, migraine headaches, ulcers,
  gastrointestinal disorders
• Denial is present on every level
• Compulsive behaviors appear to defend against the
  stress
• Overeating, oversleeping, overworking, spending,
  gambling, exercising, achieving
• The patterns will continue in new family system

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Characteristics of Chemically Dependent Families

• Blaming and defensiveness
• Used as a means of coping and avoiding pain
• Isolation despite the appearance of enmeshment
• There may be no emotional connection between them
• Feelings are not expressed openly or
  appropriately
• Pain, anger sadness or hurt may be discounted
• Role transfers
• Children acting parents and parents acting as
  dependent children

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Rescuing Someone From Addiction

• Relationships
• Consider physically separating from
  partner/family
• Teach detachment skills
• Enabling
• Remove client from enabling family members
• Investigate love verses enabling
• COA/ACOA issues
• Educate on effects on family
• Relapse clients address these early on

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Ways to Destroy the Culprit ( Codependency)

• Perfectionism
• 3 Ps (perfectionism, procrastination, paralysis)
• Vocabulary
• Change I cant to I choose not to or I
  wont
• Decision making
• Make everyday decisions
• Choices
• Every action is a chosen action

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Teach H.A.L.T.

• 3-6 Meals a Day
• Exercise (walking)
• 8-9 Hours of Sleep (naps okay!)
• Practice Prayer and meditation
• Talk to sponsor, be around positive people

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Communication Skills I cant to I wont
Saying NO Setting BoundariesAssertiveness
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Clients with a Child with FASD

• Extreme shame
• Grief
• Stigma
• Self-esteem
• Acceptance

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Referral for Assessments

• Diagnostic evaluation
• Ongoing assessments
• Medical
• Mental health
• Occupational and physical therapy
• Speech and language
• IQ and academic achievement

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Strategies for Helping Children with FASD

• Modify childs environment
• Structure Routine Repetition Support
• Use literal, concrete language and check for
  understanding
• Do not isolate the child
• Potential child abuse

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Parenting Strategies

• Strategies that have been modeled on other
  developmental disabilities
• Often, children are already receiving services
  make sure they are the correct services

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Education, Direction, and Support for
Families/Caregivers

• Educate about FASD
• Assist families to change family paradigm Johnny
  is lazy to Johnnys brain does not allow him to
  understand things easily
• Long-term support family counseling, support
  groups

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Ongoing Case Management

• Future support for child
• Respite care
• Possible kinship care
• Possible foster care placement

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Help Women to Change Their Belief SystemsMaybe
I Could Experience Good Things in Life?

• Encourage her to nourish, giggle, hug, create,
  take risks, massage and to sit and listen and you
  will witness a BEAUTIFUL SOUL BLOOM !
• Hello SOUL-SELF!

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Carl Jungs theory of synchronicity We are
all connected and intertwine with perfect timing.
There is a reason for everything. There are no
mistakes!
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• Children with FASD grow up we treat them in our
  human service agencies

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University of WashingtonFetal Alcohol and Drug
Unit

• In a study that examined 415 persons with FASD
  between the ages 6-61,
• Dr. Ann Streissguth found

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Potential Secondary Disabilities

• mental health problems (90)
• disruptive school experience (60)
• trouble with law (60)
• confinement (50)
• inappropriate sexual behavior (50)
• alcohol/drug problems (30)
• dependent living (80)
• employment problems (80)

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Identifying Clients with FASD

• Assessments to include
• Recidivist client?
• Tell me about your birth experience, what was
  your birth weight?
• Any infant/childhood health issues? Ear
  infections as an infant?
• Did your mom drink, was she an alcoholic?
• Were you raised in foster care? Adopted?
• Any developmental, learning issues? Ever in
  special ed?
• What was your best subject in school? Reading?
  Math?
• Ever diagnosed with ADD or any other MH
  disorders? Which ones?

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Behavioral profile of FASD

• Reduced IQ
• Learning deficits
• Increased activity and reactivity
• Perseverative
• Attentional deficits
• Poor fine and gross motor skills
• Developmental delays
• Feeding issues
• Hearing deficits
• Sensory integration

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Adults with FASD

• Naïve
• Victimization
• Poor judgment-easily led
• Poor and time management
• Difficulties with independence
• Mental health disorders

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Common disorders identified with FASD

• Autism/Aspergerss Disorder
• Attention Deficit Hyperactivity Disorder (ADHD)
• Borderline Personality Disorder
• Attachment-Bonding Disorder

• Depression
• Learning disability
• Oppositional-Defiant Disorder
• Post Traumatic Stress Disorder (PTSD)
• Receptive-Expressive Language Disorder
• Conduct Disorder

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Case Management Considerations

• Systems Problem
• Input information
• Processing (organization, storage and retrieval)
  of information
• Output information

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Be Innovative and Creative

• Follow your intuition
• Watch the client and learn from the messages she
  sends
• Re-Think the System
• How can we adapt our services to better serve
  this client?

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Think Younger

• Strengths and limitations
• Inconsistent abilities
• Issues related to chronological vs. developmental
  age

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Meeting Sessions

• Set appropriate boundaries
• Focus on clients strengths
• Address the stigma associated with FASD
• Focus on self-esteem and personal issues
• Address resistance, denial, and acceptance
• Provide hope
• Remind client that you are staying with her

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Expect and Be Prepared For

• Inconsistent behaviors
• Problems with perception and de-coding
  information
• Problems with decision making
• May not understand time
• Impulsiveness
• Poor judgment
• Distinguishing between public and private
  behaviors
• Frustration with transitions
• Easily led
• Need for increased 11 sessions
• Need for a mentor or buddy

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Communication

• Check often for client understanding
• Review written materials
• Repeat information
• Use simple, concrete language
• Present ideas or instructions one at a time

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K.I.S.S.

• Short term goals
• Limit cognitive assignments
• Constant monitoring of information comprehension
• Speak the same language
• Address issues of loss, trust, and abuse

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Accepting their disability

• Help client recognize their disability in
  reasoning, judgment and memory
• Help client understand that everyone has
  strengths and weaknesses
• Accept client for who they are today-not who
  they will be if they do this and that
• Ignore some of their issues/difficulties
• Recognize their effort to improve

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Counseling Clients with FASD

• Remember
• They will be skilled at reading your expressions
  to determine the response you expect
• Consider the source, while forming opinions of
  family/spouse/friends or circumstances being
  reported
• Much of what you say to client will probably be
  misunderstood and misrepresented to family peers

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Stay with Client

• If a technique is not successful, try something
  new (ADAPT THE SYSTEM OF CARE)
• They can learn with lots of repetition and
  support
• 12 Step recovery works for clients with
  addictions
• Use direct eye contact (unless this produces
  anxiety), repeat things and use short term
  instructions
• FOLLOW YOUR INTUITION!

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Adult Clients with FASD

• Long term case management
• vocational rehabilitation (job coaches)
• reproductive health (appropriate birth control)
• transition planning
• housing
• peer/recreational involvement
• Developmental disability services
• Medicare/caid
• Supplemental Security Income (SSI)

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Identify or Create Natural Connections

• Community Connections
• Family
• sisters, mothers, grandmothers, daughters, grand
  daughters
• AA/NA
• Womens meetings, womens retreats
• Women Circles/Clubs/Meetings
• Artist way meetings, inner child groups, quilting
• Spiritual Communities
• Social Activities
• Health Club/Physical Activities
• Clubs for Adults with Disabilities
• Art or yoga classes

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Issues Facing Families Affected by FASD

• Role of family in preventing alcohol-exposed
  pregnancies
• Need for family to accept clients disability
• Anger toward birth mother

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Family Materials

• Guides and Books
• NOFAS Parent Handbook Fetal Alcohol
  SyndromePractical Suggestions and Support for
  Families and Caregivers, NOFAS, Kathleen Tavenner
  Mitchell,2002.
• The Challenge of Fetal Alcohol Syndrome
  Overcoming Secondary Disabilities, Streissguth,
  Ann. 1997.
• Videos
• Recovering Hope Mothers speak out about Fetal
  Alcohol Spectrum disorders, SAMHSA, FASD Center
  for Excellence, 2004 order at http//store.health.
  org/catalog/ProductDetails.aspx?ProductID16955
• Fetal Alcohol Spectrum Disorders An Overview,
  NOFAS. http//www.nofas.org/estore/
• Newsletters
• Iceberg http//www.fasiceberg.org/
• Notes from NOFAS http//www.nofas.org/news/newsle
  tter.aspx
• Tools
• Toolkit for Parents and Caregivers, available
  through NOFAS
• 1-800-66-NOFAS

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A Matter of Ethics

• Important to get an accurate diagnosis so that
  treatment plans can be tailored
• Need to refer children for evaluation as raising
  a child with an FASD can affect recovery
• Need to be sensitive when discussing FASD with
  clients