THE ROLE OF THE SOCIAL WORKER

IN PREVENTING, IDENTIFYING AND

TREATING FETAL ALCOHOL
SPECTRUM DISORDER (FASD)
Presented by:
Leigh Tenkku Lepper, PhD, MPH
David Deere, LCSW

Learning Objectives
Participants will:
Be able to describe Fetal Alcohol Spectrum Disorders
Understand ways in which the social worker may help

women clients reduce or quit alcohol use and prevent

them from having a child with an FASD.
Learn how the social worker can identify clients who they
suspect may have an FASD.
Learn ways in which the social worker can use current
evidence-based interventions to treat or improve the lives
of those living with an FASD and their caregivers.

What is FAS

Fetal Alcohol Syndrome (FAS) is a disorder resulting from

maternal prenatal use of alcohol resulting in abnormalities
in the child covering three domains:

growth

neurobehavioral abnormalities

facial abnormalities
Historically, many terms have been used to describe
individuals affected by maternal alcohol use during
pregnancy. Fetal Alcohol Spectrum Disorders (FASD) is the
umbrella term used to describe the range of effects that can
occur in an individual whose mother drank alcohol during
pregnancy.

What are Fetal Alcohol Spectrum Disorders?

The child presents with

damage to the central
nervous system from
prenatal alcohol
exposure which
includes facial features
such as a smooth
philtrum.

The child presents with

the damage to the
central nervous system
from prenatal alcohol
exposure but does not
exhibit the facial
features.

The child presents

with a variety of organ
systems issues (i.e.
heart, kidneys, bones,
hearing, or a mixture)
from prenatal alcohol
exposure.

Neurodevelopmental Disorders-Prenatal
Alcohol Exposure (ND-PAE), new 2013
315.8 Other Specified Neurodevelopmental Disorder:
Neurodevelopmental Disorder associated with
Prenatal Alcohol Exposure (ND-PAE)
Why DSM-5 Diagnosis Was Needed
There was no mental health code that adequately
documented the cognitive and mental health
impacts of prenatal alcohol exposure
People with FASD may not respond to treatments
used with the existing codes
Providers and families often struggled with
obtaining reimbursement for habilitative care

Diagnosis of ND-PAE requires meeting

all seven criteria:
I. History of Prenatal Alcohol Exposure
More than Minimal Levels of PAE
More than 13 drinks per month or more than 2 on one
occasion
If one meets criteria for full FAS then ND-PAE can be
diagnosed without documented exposure
Documentation can be from maternal self-report,
medical and other records, or clinical observation

II. Neurocognitive Impairment

As evidenced by 1 (or more) of the following:
1. Global intellectual impairment
2. Impairment in executive functioning
3. Impairment in learning
4. Impairment in memory
5. Impairment in visual spatial reasoning

III. Impairment in self-regulation in 1 (or more) of the

following:
1. Impairment in mood or behavioral regulation
2. Attention deficit
3. Impairment in impulse control

IV. Deficits in Adaptive Functioning Skills

As manifested in 2 (or more) of the following, including at least
(1) or (2):
1.
2.
3.
4.

Communication deficit
Social impairment
Impairment in daily living
Motor impairment

V. The onset of the disturbance before 18 years of age.

VI. The disturbance causes clinically significant distress
or impairment in social, occupational, or other
important areas of functioning.
VII. The disturbance is not better explained by the direct
physiological effects associated with postnatal use of a
substance (e.g., medication, alcohol or other drugs), a
general medical condition (e.g., traumatic brain injury,
delirium, dementia), other known teratogens (e.g., Fetal
Hydantoin syndrome), genetic condition (e.g., Williams
syndrome, Down syndrome, Cornelia de Lange syndrome),
or environmental neglect and/or abuse

Fetal Development and FASD

Fetal Alcohol Spectrum
Disorder is a spectrum
disorder because brain
damage, which is the
primary condition, is based
on when the mother drank
during fetal development.
Therefore each child will
present with different
challenges in occupational
performance and cognitive
abilities.

Typical Brain Damage in FASD

Prevalence of FAS/FASD
May et al 2009 prevalence in younger school children

may be as high as 2-5% in the US

Sampson et al 1997 combined rate of FAS and ARND,
or all FASDs estimated at 9.1/1000 live births in some
Western European countries
May and Gossage 2001 FAS, ARBD, and ARND may
affect as many as 10 per 1,000 live births or more
depending upon the specific diagnostic methods and
criteria used.

FASD and Secondary Conditions

Mental
Health
Problems
Legal
Problems

School
Problems

FASD
Alcohol &
Drug
Problems

Sexual
Problems
Dependent
Living

Challenges of Parenting Children with

FASD
Challenge

Statement

Preventing Setbacks

Giving constant reminders

Making Time for Myself

Burnout

Keeping Plans

Going away on a holiday

Home-School Collaboration

Expectations too high in school

Keeping Child Involved

Getting a diagnosis

Lack of Support

Not knowing what resources I can

access

Social Isolation

Not invited to birthday parties

Behavioral Problems

Does not understand consequences

Brown & Bednar, 2004

Ryan, Bonnett, Gass, 2006)

The Assessment Circle

client

worker

related
systems

The assessment circle represents the interrelated nature of

the systems which interact in the assessment process.

Social Worker Roles

Micro roles:
Assessment
Counseling/Psychotherapy
Group Work
Case management/care coordination
Education and Support
Referral
Discharge/transition planning

Macro roles:
Advocacy, Education
Resource Development
Network Building
Policy Making

Social Workers Roles - Micro

Prevention

Educate women
about pregnancy &
drinking

Educate social
work providers
about FASD

Identification

Observe &
document
behaviors &
facial features

Talk to mom
about drinking
history

Diagnosis

Refer to
diagnostic team

Be a part of a
diagnostic team

Management

SW intervention

Address
secondary
conditions

Social Work and FASD

Most Social Workers encounter a child with FASD due to

a referral from other social workers, case workers,

medical personnel, teachers, or parents. Common
presenting issues:
Mental health issues ADHD, depression, anxiety
Issues in school not attending
Behavioral issues aggression, defiance, oppositional,
inattention, poor judgment
Social Issues unable to get along with others, or lack
of friendships
Developmental Delays typically behind development
for their age

Social Work Intervention

Assessment:

Biopsychosocial of family and child needs

Screening for mental/behavioral health issues
Standardized assessment instruments
Financial concerns/stresses
Assess alcohol issues in family

Collect and review collateral information:

Preschool records
Educational records/assessments (EI)
Medical Records

Alcohol Screening and Brief Intervention

Referral and Treatment (SBIRT)
Is a clinical preventive service
Involves a validated set of screening questions to help

identify client drinking patterns

Includes a short conversation with client who may be
drinking too much
For clients drinking at high risk levels, may include referral
to specialized treatment
Brief intervention takes only a few minutes, is inexpensive
and may be reimbursable.

Adept.Missouri.edu
Alcohol and Drug Educa,on for Preven,on and Treatment: SAMHSA
funded at MU
Developed online training modules to teach MI
Conducted role play component of MI in the clinical simula,on center
using Face to Face simulated encounters with trainee (physician) and
Standardized Pa,ent

SBI Training in Virtual World

using Avatars

Counseling/Psychotherapy
Family
Behavioral issues
Family relationships
Individual
Coping skills
Social skills
Group
Support
Education

Education & Support

Family
Child may appear to be able to function but the brain damage makes

it challenging Cant vs. Wont

Tremendous variation in presentation of the child, depending on when
the brain was exposed to alcohol during fetal development

Individual
Understanding of diagnosis
External Brain accommodating, reframing, brainstorming
Social Supports

Diane Malbin, MSW (Fascets.org)

The following neurodevelopmental characteristics are commonly
associated with FASD. No one or two is necessarily diagnostically
significant; many overlap characteristics of other diagnoses, e.g. ADD/
ADHD, learning disabilities, and others. Typical primary characteristics
in children, adolescents, and adults include:
Memory problems
Difficulty storing and retrieving information
Inconsistent performance ("on" and "off") days
Impulsivity, distractibility, disorganization
Ability to repeat instructions, but inability to put them into action ("talk the
talk but don't walk the walk")
Difficulty with abstractions, such as math, money management, time
concepts
Cognitive processing deficits (may think more slowly)
Slow auditory processing (may only understand every third word of
normally paced conversation)
Developmental lags (may act younger than chronological age)
Inability to predict outcomes or understand consequences

Strengths
Many people with FASD have strengths which mask their
cognitive challenges.
Highly verbal
Bright in some areas
Artistic, musical, mechanical
Athletic
Friendly, outgoing, affectionate
Determined, persistent
Willing
Helpful
Generous
Good with younger children

Preventable secondary characteristics

In the absence of identification, people with FASD often
experience chronic frustration. Over time, patterns of defensive
behaviors commonly develop. These characteristics are believed
to be preventable with appropriate supports.
Fatigue, tantrums
Irritability, frustration, anger, aggression
Fear, anxiety, avoidance, withdrawal
Shut down, lying, running away
Trouble at home, school, and community
Legal trouble
Drug / Alcohol abuse
Mental health problems (depression, self injury, suicidal
tendencies)

Partners for Success Intervention

WHAT: In PFS, we used a combined approach of working with

both the family and the individual to address maladaptive

behaviors of the young adult over a six month period.
WHO: 42 individuals diagnosed with FAS or other disorder
under the umbrella of FASD and their families randomized to
intervention versus control
WHEN: Started March 2011 and completed in August 2012
HOW: Intervention group received bi-weekly therapy sessions
with trained LCSW therapist. Youth met bi-weekly with a trained
BSW mentor
RESULTS: No difference between groups for the youth
Intervention parents improved coping skills, decreased their self-

controlling behaviors and increased their acceptance of responsibility

scores.

FASD & The Educational System

Need for early intervention
IEP or 504 plan
Adaptation of environment to meet needs
Social/Peer Issues

Found at mrfastc.missouri.edu/services

Case Management
Medical
Educational
Mental Health
Financial
Disability SSI

Adulthood
Independent living
Financial stability/resources
Money management
SSDI

Employment and help with staying on the job

Referral
Community resources
Medical
Diagnosis
Potential complicating medical issues
Supporting therapies
Occupational therapy Sensory Integration
Physical therapy
Speech Therapy

Educational
Special Education or 504 plan
Supporting therapies for learning

Mixed sensory responses

High rates of Sensory
Processing Disorder

Balance problems
Challenges with:
Fine motor
Gross motor

Motor &
Praxis

Sensory
Issues

Behavior
Regula,on

Cogni,on

InaIen,ve
Impulsive
Social challenges

Poor judgment
Challenges with abstract
concepts
Poor execu,ve func,oning

Source: Doll, J. D. (2013). The role of occupational therapy with fetal alcohol spectrum disorder (FASD).
Retrieved from http://www.heartlandcenters.slu.edu/mrfastc/ot/

Social Workers Roles - Macro

Resource
Development

Find interventions
and written
materials

Write locally
relevant
materials

Network
Building

Join existing
coalitions and
groups

Organize new
coalitions

Program
Development

Determine
assets and
needs

Build on
strengths to
develop services
and supports

Advocacy
and
Education

Increase
awareness
and
understanding

Advocate for
change in rules
and laws

Resource Development
Information dissemination is a way to increase

awareness and knowledge

Become knowledgeable about where to find
reliable resources, then direct people to those
materials or distribute the materials directly
In some cases, you may want to adapt materials
for local settings and programs

Resource Identification and

Development
WEB LINKS:
NOFAS Resources: www.nofas.org/resources
SAMHSA: fasdcenter.samhsa.gov
Centers for Disease Control and Prevention: www.cdc.gov/ncbddd/fasd/
National Institute on Alcohol Abuse and Alcoholism (NIAAA):
www.niaaa.nih.gov/research/major-initiatives/fetal-alcohol-spectrum-disorders
FAS Community Resource Center: www.come-over.to/FASCRC (site for families)
American Academy of Pediatricians (AAP):
www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/fetal-alcohol-spectrum-disorders-tooklkit/Pages/

default.aspx

American Congress of Obstetricians and Gynecologists:

http://www.acog.org/About_ACOG/ACOG_Districts/District_II/Fetal_Alcohol_Spectrum_Disorders

Network Building
In some cases you may find an existing network to join

- Add your skills and expertise

- Invite your colleagues to also join the network
If you dont find the desired network, you may be the
person to start the collaboration
- Look to programs whose purpose overlaps with
concerns within the FASD community, beginning
with programs that exist in every state
- Reach out to programs that are unique to your
locale

Network Building through Agencies

Involved with FAS
WEB LINKS
NOFAS: http://www.nofas.org/affiliates

http://www.nofas.org/resource-directory
University Centers on Disabilities: www.aucd.org
State Developmental Disabilities Agency: www.nasddds.org/state-agencies
Early Identification (Part C for 0-3 y/o): ectacenter.org/contact/ptccoord.asp
IDEA Section 619 (3-5 y/o): ectacenter.org/contact/619coord.asp
Title V: www.amchp.org/Policy-Advocacy/MCHAdvocacy/Pages/StateProfiles.aspx
Adult Protective Services: www.napsa-now.org/get-help/help-in-your-area
The Arc: www.thearc.org/find-a-chapter
March of Dimes: www.marchofdimes.org/chapter_view_all.asp
Easter Seals: www.easterseals.com/connect-locally
National Alliance on Mental Illness (NAMI): www.nami.org/About-NAMI
Developmental Disabilities Provider Organizations: www.addp.org/

Program Development
Use asset mapping to understand strengths and

challenges
Build on existing strengths to expand services and to
address areas of need
Look at existing and potential networks to enhance
services
Consider possible funding options to carry out program
objectives
Recruit leadership to carry out strategic plan

Advocacy and Education

Depending on your role and your relationships:
Educate clinicians
Educate policy makers
Remember that policies can be as important as laws
- Focus on state agencies and service providers
- Educate local, state, and federal elected officials
about the realities and costs of FASDs
Allies for Advocacy and Education
Disability Rights: www.ndrn.org/en/ndrn-member-agencies.html
Legal Services Corporation: www.lsc.gov/find-legal-aid
Parent Training and Information Centers (PTI): www.parentcenterhub.org/find-your-center
Family to Family Health Information Centers: www.familyvoices.org/page?id=0052

Interventions
Early Intervention Services
Research supports early intervention services that can improve child development
Services can include therapy to help child from birth to 36 months to talk, walk and interact with

others
I.D.E.A.
Speech therapy and language delays often do not require a formal diagnosis to receive
treatment

Protective Factors
Early diagnosis
Involvement in special education and social services
Loving, nurturing, and stable home environment
Absence of violence

Types of Treatments

Fetal alcohol spectrum disorders competency-based curriculum development guide for medical and allied health education and practice.
Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/fasd/curriculum/index.html

Types of Treatments
Medical Care
Medication
Stimulants
Antidepressants
Neuroleptics
Anti-anxiety drugs
Behavior and Education Therapy
Friendship training (Mary OConnor and colleagues)
Specialized math tutoring (Claire Coles do2learn.com)
Executive functioning training (Ira Chasnoff alertprogram.com)
Parent-child interaction therapy (Heather Carmichael Oldson families moving forward.com)
Parenting and behavior management training
Parent Training
Alternative Approaches

Discharge/Transition planning
Transition planning should:
Be individualized
Be a process, not a one-time event
Begin early, as early as day one
Honor the patient and familys goals, preferences,
observations, and concerns
Identify and answer patient or family questions or
concerns, using simple, concrete language
Identify resources in that are in place and those needed
for the transition, paying close attention to supports that
are needed

Conclusion
FASD impacts occupations significantly and it is important

for Social Workers to have a comprehensive

understanding of FASD
The field of social work is ideally situated to be a
significant provider and support system for the child/adult
with FASD and their caregivers.

Lets apply the concepts discussed in this module to the

case of Sean

Case Example Sean, 9 years old

Pregnancy & Birth
Mother drank to excess several times a week during first trimester
Normal vaginal delivery, full term but small for gestational age
Child adopted at birth

Developmental History
Small for age, but typical growth
Difficulties in school
Poor social skills
Diagnosed with ADHD and low IQ

Parents Report
Loving and caring at times
Trouble following directions
Easily overwhelmed and can become aggressive
Needs a great deal of supervision
Mother quit her job to meet Seans needs resulting in financial stress for the family
Parents exhausted

You are a social worker at a community mental health agency. What assessment,
interventions, support and referrals could be helpful to this family.

Quiz
1. The facial features of a child with FAS include all the following except:
a.
Smooth philtrum

Wide set eyes

Thin upper lip
Short palpebral fissures
2. The part of the brain most sensitive to alcohol exposure is:
a.
Hippocampus
b.
Brainstem
c.
Cerebellum
d.
Amygdala
3. The most common secondary condition diagnosed with FASD is:
a. ADHD
b. Anxiety disorder
c. PTSD
d. Depression
4. Children with FASD commonly have:
a. Mental health issues ADHD, depression, anxiety
b. Issues in school
c. Social Issues
d. Developmental Delays
e. All of the above
b.
c.
d.

Quiz
5. The DSM 5 includes a new diagnosis category for those with fetal alcohol spectrum disorders
a. ARND
b. ND-PAE
c. ARBD
d. FAE
6. A child/youth with fetal alcohol spectrum disorders may also have secondary conditions such as:
a. Mental health problems
b. School problems
c. Alcohol and drug problems
d. Legal problems
e. All of the above
7. Intervention services for those with fetal alcohol spectrum disorders can include:
a.
Medication
b.
Early intervention services
c.
Behavior and education therapy
d.
Parent training
e.
All of the above

References
Brown, JD, Bednar LM, & Sigvaldason N. (2007). Causes of placement breakdown for foster children

affected by alcohol. Child and Adolescent Social Work Journal, 24(4), 313-332. doi:10.1007/
s10560-007-0086-9
Brown JD, & Bednar LM. (2004). Challenges of parenting children with a Fetal Alcohol Spectrum Disorder:
A concept map. Journal of Family Social Work, 8(3): 1-18
Carr JL, Agnihotri S, & Keightley M. (2010). Sensory processing and adaptive behavior deficits of children
across the fetal alcohol spectrum disorder continuum. Alcoholism: Clinical and Experimental Research, 34,
1-11. doi:10.1111/j.1530-0277.2010.01177.x
May PA, and Gossage JP. 2001. Estimating the prevalence of fetal alcohol syndrome: A summary. Alcohol
Research & Health 25(3):159- 167. www.niaaa.nih.gov/publications/arh25-3/159-167.htm
May, PA, Gossage JP, Kalberg WO, Robinson LK, Buckley D, Manning M & Hoyme HE (2009). Prevalence
and epidemiologic characteristics of FASD from various research methods with an emphasis on recent inschool studies. Developmental Disabilities Research Reviews, 15(3), 176-192.
Ryan DM, Bonnett DM, & Gass CB. (2006). Sobering thoughts: Town hall meetings on fetal alcohol
spectrum disorders. American Journal of Public Health, 96, 2098-2101. doi:10.2105/AJPH.2005.062729
Sampson PD, Streissguth AP, Bookstein FL, Little RE, Clarren SK, Dahaene P, Hanson JW, & Graham JM
Jr. (1997). Incidence of fetal alcohol syndrome and prevalence of alcohol-related neurodevelomental
disorders. Teratology, 56, 317-326.
Tenkku Lepper LE, Wilton G, Doll J, Mitchell K, Senturias Y, Weinberg J. (2015). Competency VI: Treatment
Across the Life Span for Persons with Fetal Alcohol Spectrum Disorders. Fetal alcohol spectrum disorders
competency-based curriculum development guide for medical and allied health education and practice.
Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/fasd/curriculum/index.html