Fetal Alcohol Spectrum Disorders (FASD): Identification and Interventions
Kathryn Shea, LCSWPresident/CEOThe Florida Center for Early ChildhoodSarasota, FL
Crosses all socioeconomic groups. Lower socioeconomic group: 2.6 per 1000 live births, compared with 0.6 per 1000 live births from middle SES group.
New estimate is 1 out of every 8 Americans are children of problem drinkers.
FAS is now the leading known cause of intellectual disability in the U.S., exceeding spina bifida and down syndrome, and is the only one that is preventable. Some research is suggesting it is the leading cause of learning disabilities and ADHD and is showing a high correlation with children born with cerebral palsy.
FASD
Alcohol produces by far the most serious neurobehavioral effects in the fetus when compared to other drugs, including heroin, cocaine and marijuana.*
Annual cost estimates for FAS and related conditions in the United States range from $75 million to $9.7 billion.*
There has been no reduction in the proportion of women who are heavy drinkers at the time of conception. *
* Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention and
Treatment, 1996
FASD
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 woman’s drinking alcoholic beverages while she is pregnant. This year marks the 40th anniversary of FAS diagnosis.
Specific pattern of facial features
Pre- and/or postnatal growth deficiency
Evidence of central nervous system dysfunction
Alcohol use during pregnancy
Fetal Alcohol Syndrome
Photo courtesy of Teresa Kellerman
Source: http://www.depts.washington.edu/fasdpn/face.html
Facial Dysmorphology GuideThe three facial features of FAS include: short palpebral fissures, a smooth philtrum, and a thin upper lip (Rank 4 or 5 on the Lip-Philtrum Guide (with permission, Susan Astley, University of Washington).
(Used with permission from Dr. Susan Astley, University of Washington)
4 – Digit Diagnostic Code
Other FAS Physical Abnormalities98% under normal height and weight 84%Microcephalic89% Mental and Motor Retardation 80% Speech
impediments20% Hearing problems 20% Swallowing/Feeding72% Hyperactive 58% Slack muscles20% Autism/Aggressive/Social Problems 95% Facial anomalies29% Heart defects 10% Kidney defects46% Genital deformities 25% Eye/vision
problems16% Bent crooked little finger 51% Shortened and bent
little finger13% Underdeveloped fingers 9% Hip deformities16% Small teeth 7% Concave chest7-20% Cleft palate 12% Hernia44% Spinal dimple35% Hair growth on back of neck
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.
Released 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.”
What is Fetal Alcohol Spectrum Disorders ?
Introduce Screening Tool
Screening for FASD
The effect of alcohol on a baby’s 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 baby’s brain may be smaller, structurally or functionally damaged, with right/left hemisphere abnormalities.
Source: Dr. Edward Riley, Ph.D., San Diego State Univ.,
Brain Abnormalities related to Prenatal Alcohol Exposure
Source: Clarren, S,K.
Brain Size in infants exposed with and without full features of FAS
Corpus callosum abnormalities
Mattson, et al., 1994; Mattson & Riley, 1995; Riley et al.,1995
FASD: Core Diagnostic CriteriaCNS Abnormalities
Neurological◦ Seizures◦ Weakness◦ Persistence of Primitive reflexes◦ Hypotonia◦ Ataxia ◦ Abnormal Motor Function
Risk Factors Dose of alcohol Pattern of exposure - binge vs chronic Developmental timing of exposure Genetic variation Maternal characteristics Synergistic reactions with other drugs Interaction with nutritional variables
How FASD affects Sensory Processing
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
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
How FASD affects Sensory Processing
How FASD affects Sensory Integration/Sensory Processing
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
Normal Sensory Integration
source: Dorothy Schwab
Disordered Sensory Integrationsource: Dorothy Schwab
Results of Poor Sensory Processing
• SENSORY OVERLOAD (Shutdown or Disorganized Behavior)
• EMOTIONAL LABILITY/IRRITABILI1Y/INSTABILITY
• DIFFICULTY IN INTER-PERSONAL RELATIONSHIPS
• LEARNING PROBLEMS• BEHAVIOR PROBLEMS• POOR SELF-ESTEEM• PERCEPTUAL PROBLEMS
Qualities of a Sensory Processing Disorder (SPD)
Integration of the sensory systems is the prerequisite for all higher level skills. (Ayres)
“If, in the central nervous system, those seven sensory systems are adequately registering and processing information, all sensorimotor development will be supported.”
(Williams and Shellenberger)
Issues with State Regulation
What is state regulation?◦State is a group of characteristics that regularly occur together; body activity, eye movements, facial movements, breathing pattern, and level of response to external stimuli
(e.g., handling) and internal stimuli (e.g., hunger).
27
Blackburn, S & Blakewell-Sachs (2003). Understanding the Behavior of Term . Infants. White Plains, NY: March of Dimes Birth Defects Foundation
28
GAS
“revved up”
“dampened down”
BRAKE
Stressor(Constance M. Lillas, Ph.D.; 1999 Slide courtesy of A. Pinto, Ph.D. 2005)
“Gleam in the Eye”Attentive, Interested,
Engaged, Joyful
excited
agitated nervous
angryshouting
panickedrageful
flooded
daydreamingwithdrawnindifferent
flat
sad
alert, not processing
dampeneddepressedfrozenterror
Arc of State Regulation
Behaviors Associated With FASD
Infancy - poor sleep patterns, difficulty feeding, fussy/irritable temperament, prolonged crying, difficult to soothe/comfort, over/under reactive to stimuli or sensations, difficulty forming attachment
Toddler/Early Childhood – aggressive, highly active and impulsive, poor attention span, disorganized, no sense of danger, poor sleep patterns, pica, self-injurious, poor sensory processing and self-regulation
Behaviors Associated With FASD Latency age – poor cause/effect relationships, does not
understand rules or consequences, difficulty at home and school, anxious, fearful, takes things that don’t belong to them, tells stories or fabricates when not sure how to answer, poor abstract thinking, poor social skills, poor sensory processing
Adolescence/Adulthood - Cannot manage daily living skills without adult supervision, overly friendly with poor physical/verbal boundaries, poor judgment, easily influenced by peers, might be able to state the rule but cannot follow it, can have high verbal skills but poor thinking skills, impulsive, poor sensory processing
What Causes These Behaviors?
Behaviors associated with FASD are caused by CNS (brain) damage.
Environmental factors can
compound the problem (domestic violence, neglect/abuse, poverty, teen or single parent, parental substance abuse)
Multiple disruption from relative or foster care placements due to behavior disrupts attachment which is critical to sound social/emotional development
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.
Secondary Disabilities
Streissguth, et al., 1996
Fetal Alcohol Spectrum Disorders
Successes take place when we stop trying harder and start trying differently.
From: Fantastic Antone Succeeds
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
Clinical Interventions Physical – Brain Gym, Yoga, Relaxation Techniques,
Deep Breathing, Sensory Activities, Obstacle Course Affective – DIR based therapy, role playing, social
stories, feeling collages, feeling cards, 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
FASD Intervention Strategies
This is my brain! It helps me to think and make the right
choice! k. shea,, 2002
Kathryn Shea
Therapy Tools/Strategies
Problem Solving Name: _____________________ My Problem: _____________________
Hmmm. What should I do?? Ah Ha!!! I have an idea! I will _______________
Therapy Tools/Strategies
MindUP™ Curriculum by the Hawn Foundation
MindUP™ for schools is an evidence-based, CASEL accredited social and emotional learning program that reduces stress, improves academic performance, strengthens abilities for concentration, encourages emotional regulation, and nurtures optimism, empathy, and happiness in the classroom.
Therapy Tools/Strategies
Intervention Services for Parents/Caregivers
Relationship Assessment◦ Affective tone◦ Parent handling of child◦ Child’s response to handling◦ Parents understanding of child’s behaviors
Relationship Interventions ◦ DIR Model (Floor Time)◦ Theraplay◦ Child Parent Psychotherapy◦ Families Moving Forward (FMF)
Estimated that over 50% of women in SA treatment have an FASD
Traditional treatment approaches are ineffective for these women
Cognitive deficits (poor planning, poor organization, poor memory, poor cause/effect)
Need for FASD screening of all women entering treatment and change of treatment protocol to ensure success
Substance Abuse Treatment for Women with FASD
Don't sweat the small stuff. Choose one or two critical behaviors at a time to work on.
Be firm, yet flexible. Rigidity can increase oppositional behavior.
Remember they are not willfully trying to make you exhausted or crazy.
Allow yourself to grieve the loss of a "whole" person.
Don't expect them to act the same as every other child their age. They are not like children who don't have brain damage.
Keep the mood positive. Give five times more praise to every one correction.
Ten Tips for Parents of Children with Fetal Alcohol Spectrum Disorder
Don't hurry them. Defiant behavior increases when under pressure.
Don't take them places where they are likely to have problems. These are most often church, restaurants, malls, new and unfamiliar places, and events with high numbers of people and loud noise.
Do something fun with them everyday. Encourage their sense of humor and yours.
Advocate for their needs. It will make you feel better about them and yourself.
Do something for yourself every day. A good warm bubble bath with soft music is a great way to end a stressful day.
Kathryn Shea, LCSW
Ten Tips for Parents of Children with Fetal Alcohol Spectrum Disorder
Don't hurry them. Defiant behavior increases when under pressure.
What can Case Managers/Front Line Workers Do?
Obtain substance abuse history on mother and family members (age of first drink, history of rehab prior to and following pregnancy, medical issues which might be related to alcohol)
Obtain birth and medical records on children in care, especially those demonstrating developmental, learning, or behavioral problems
Fetal Alcohol Spectrum Disorder
What can Case Managers Do? Refer for Assessment of Child
Strengths/Deficits in all developmental areas – ◦ Sensory, Motor, Language, Cognitive,
Emotional, Social (Ages and Stages for young children)
◦ Check educational placement and status (Special Ed services, IEP, classification, behavior/learning problems, etc.)
◦ Make referrals for specialty assessments in needed areas (Speech, OT, PT, Mental Health, Psychology, FASD Diagnostic Clinic)
Fetal Alcohol Spectrum Disorder
Universal Protective Factors Living in a stable and nurturing 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;
Fetal Alcohol Spectrum Disorder
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
Fetal Alcohol Spectrum Disorder
FAS – Only the tip of the iceberg
Fetal alcohol syndrome
Fetal alcohol Spectrum Disorders
Clinical suspect but appear normal
Normal, but never reach their potential
Adapted from Streissguth
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.
FASD Resources Fetal Alcohol Spectrum Disorders: Florida Resource Guide.
Florida Department of Children and Families. Florida Department of Health. The Florida State University Center for Prevention & Early Intervention Policy. A pdf version available online at: http://www.doh.state.fl.us/family/socialwork/pdf/fasd.pdf
A Resource Guide for Florida Educators ... FASD is a physical disability with behavioral symptoms often .... For the purposes of this resource manual FAS, FAE, ...www.fldoe.org/ese/pdf/fetalco.pdf -
SAMHSA - FASD Center for Excellence - http://www.fascenter.samhsa.gov/
NOFAS - http://www.nofas.org/
Florida’s FASD ClinicFAS DPN Nationwide Clinics
The Florida Center FASD Diagnostic Clinic
Provides: Diagnostic,& Intervention Services & Statewide Training ◦Statewide FASD Diagnostic
Assessments ◦Statewide FASD Training◦Intervention services for children in
Sarasota County◦Distribution of The Truth About Alcohol
and Pregnancy Physician Rack Cards, 40,000 annually statewide
◦ Primarily funded by the DOH through legislative appropriations (CMS Program)
A Success Storyutube.com/winstephen01
Seth at 2013 O’Laughics Comedy Club
Contact Information KATHRYN SHEA, LCSW PRESIDENT & CEO Email:
www.thefloridacenter.org (941) 371-8820 For Training opportunities contact: Michelle Moreno at