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:

kathryn.shea@thefloridacenter.org

www.thefloridacenter.org (941) 371-8820 For Training opportunities contact: Michelle Moreno at

michelle.moreno@thefloridacenter.org