Transcript Slide 1

FAS Across the
Lifespan
Joni Bosch, PhD, ARNP
UIHC Center for Disabilities and
Development
Clinic Genetics
MRFASTC
Lifespan View of FASD
• Much of what we know is anecdotal
• “Behavioral phenotype”: development
•
•
•
progresses somewhat predictably
IQ may not predict functional performance
Prevention of secondary disabilities is
important
People with FASDs have neurological
injuries.
MRFASTC
Developmental Progression:
Concerns across the Lifespan
• An individual’s place, and success, in society is
almost entirely determined by neurological
functioning.
• A neurologically injured child is unable to meet the
expectations of parents, family, peers, school,
career and can endure a lifetime of failures. The
largest cause of neurological damage in children is
prenatal exposure to alcohol. These children grow
up to become adults. Often the neurological damage
goes undiagnosed, but not unpunished.
MRFASTC
Behaviors and Outcomes
Behavior
Outcomes
Poor judgment
Attention deficits
Arithmetic disability
Easily victimized
Unfocused/distractible
Difficulty handling money
Memory impairment
Difficulty learning from experience
Difficulty abstracting
Difficulty understanding
consequences
Difficulty perceiving social cues
Disoriented in
time/space
Impulsivity
Poor frustration tolerance
MRFASTC
Potential Secondary
Disabilities
• Mental health problems (over 90%)
• Trouble with the law (60%)
• Sexual misconduct (49%)
• Disrupted school experiences (60%)
• Problems with alcohol and/or drug use
(35%)
• Confinement (50%)
MRFASTC
Typical Difficulties For
Persons With an FASD
Sensory: May be overly
sensitive to bright lights,
certain clothing, tastes
and textures in food, loud
sounds, etc.
Physical: Have problems
with balance and motor
coordination (may seem
“clumsy”).
MRFASTC
Typical Difficulties For
Persons With an FASD
Information Processing:
•
•
•
•
Do not complete tasks or chores and may appear
to be oppositional
Have trouble determining what to do in a given
situation
Do not ask questions because they want to fit in
Have trouble with changes in tasks and routines
MRFASTC
Typical Difficulties For
Persons With an FASD
•
•
•
Information Processing:
Have trouble following multiple directions
Say they understand when they do not
How do I
‘straighten’
my room?
Have verbal expressive skills that often
exceed their verbal receptive abilities
•
Cannot operationalize what they’ve
memorized (e.g., multiplication tables)
•
Misinterpret others’ words, actions, or
body movements
MRFASTC
Typical Difficulties For
Persons With an FASD
Executive Function and Decision-Making:
•
•
• Repeatedly
•
break the rules
• Give in to peer
pressure
•
Tend not to learn from
mistakes or natural
consequences
•
Frequently do not respond
to reward systems (points,
levels, stickers, etc.)
Have difficulty
entertaining
themselves
I’m late!
Naïve, gullible (e.g., I’m late!
may walk off with a
stranger)
Struggle with
abstract concepts
(e.g., time, space,
money, etc.)
MRFASTC
Typical Difficulties For
Persons With an FASD
Self-Esteem and Personal Issues:
•
•
•
•
•
Function unevenly in school, work, and
development – Often feel “stupid” or like a failure
Are seen as lazy, uncooperative, and unmotivated
–Have often been told they’re not trying hard
enough
May have hygiene problems
Are aware that they’re “different” from others
Often grow up living in multiple homes and
experience multiple losses
MRFASTC
Universal Protective Factors:
Intrinsic
• Having a diagnosis of FAS (rather
than other effects of alcohol
exposure)
• IQ score below 70
MRFASTC
Universal Protective Factors:
Environmental
• Living in a stable and nurturing
•
•
•
•
home (particularly ages 8-12)
Being diagnosed before age 6
Not being a victim of violence
Not having frequent changes
of household
Having received
developmental disabilities
services
MRFASTC
Concerns in Infancy and
Early Childhood
• Poor habituation
• Irritability in infancy
• Poor visual focus
• Sleep difficulties
• Mild developmental
delays
• Distractibility and
•
•
hyperactivity
Difficulty adapting
to change
Difficulty following
directions
MRFASTC
Concerns in Middle
Childhood
• Difficulty predicting and/or understanding
•
•
•
•
•
consequences
Appearance of capability without actual ability to
perform
Potential for emerging discrepancy between
comprehension skills and expressive language
Hyperactivity, memory deficits, impulsivity
Poor comprehension of social rules/expectations
Executive function deficits
MRFASTC
Concerns in Middle
Childhood
•
•
•
•
•
•
•
ADHD symptoms interfere
with learning
Academic failure/school trouble
Concrete thinking may frustrate relationships
Gullible
Difficulty predicting and/or understanding
consequences
Difficulty with memory may bring negative feedback to
child
Poor comprehension of social rules/expectations
MRFASTC
Concerns in Adolescence
•
•
•
•
•
•
Poor adaptive functioning
Confabulation—lying or
stealing often without malice
and arising from concrete
thinking
Faulty logic
Low self-image and motivation
Academic achievement lower
than expected
Inappropriate sexual behavior
MRFASTC
Concerns in Adolescence
•
•
•
•
•
•
•
May seem more able than they really
are
Impulsivity takes on possible dire
consequences
Lack of time awareness accentuated
Relationship difficulties
Unreliable/dangerous with money
Mental health problems—depression,
anxiety
Possible trouble with law, substance
abuse if unsupervised
MRFASTC
Concerns in Adulthood
•
•
•
•
•
•
•
Not as much known about this
May seem more capable than they
really are
Development may continue to be
uneven
Secondary disabilities may
predominate
Natural support network may fall away
Available services may be crisis
oriented, not prevention or support
based
Employment failure likely
MRFASTC
Concerns in Adulthood
• Vigilance needed for addictions
• Poor comprehension of social
•
•
•
expectations
Vulnerable to social, sexual,
financial exploitation by others
Need for supervised employment
and housing
Depression, anxiety
MRFASTC
Reframing
From interpreting
behaviors as
To understanding
the individual
Won’t
Can’t
Bad
Frustrated, challenged
Lazy
Tried hard
Lies
Confabulates, fills in
Doesn’t try
Exhausted or can’t start
Mean
Defensive, hurt, abused
MRFASTC
Reframing
From
To
Fussy, Demanding
Oversensitive
Resisting
Doesn’t get it
Trying to make me
mad
Can’t remember
Trying to get
attention
Needing contact and
support
Acting younger
Being younger
MRFASTC
“Age–Appropriate Behavior”
Chronological age
w/expectations
•
•
Age 5

Age 10

•
Sit still for 15 min
Know right from
wrong
Age 18

Be independent
Developmental age
expectations
•
•
Age 5 going on 2

10 going on 6

•
Sit still for 5-10
Developing sense of
fairness
Age 18 going on 10

Needs structure and
guidance
MRFASTC
Spectrum of Capacities
•
•
•
•
•
•
•
•
Skill/Characteristic
Developmental Age
Expressive Language
Reading: decoding
Reading comprehension
Money and time concepts
Emotional maturity
Physical maturity
Social skills
Living skills
20
16
6
8
6
18
7
11
MRFASTC
Set appropriate
expectations that are:
• Based upon cognitive functioning

Think “younger”
• Developmentally appropriate

Think “more supervision”
• Understood by the individual

Don’t assume they got it
• Attainable
MRFASTC
Behavioral and Educational
Interventions
• Neuropsychological testing
• Speech/Language evaluation
• Educational interventions:
Special education placement
 504 plans
 Individualized Education Plan (IEP)

MRFASTC
Behavioral Modification
• STRUCTURE

Reminders, cues, calendars,
checklists
• Rules instead of contingencies
• Forced choice
• Visual schedules
• Lots of review
MRFASTC
MRFASTC
Antecedents of Family
Stress: Child Characteristics
• May “look good”-others may not understand
•
•
•
•
challenges and fail to support family
Difficulty learning from experience-need to
endure frustrating “re-learning”
Distractibility/impulsivity-need for constant
vigilance and supervision
Social difficulties-may lead to isolation of the
entire family
Sleep disturbances-disrupted sleep for parent
MRFASTC
Antecedents of Family
Stress: Parent Issues
• Alcohol use and parenting child with FASD
•
•
•
are a poor fit
Prior parenting strategies may not work—
leading to frustration and blame
Exhaustion plays role in parental decisionmaking
Relationships with spouse and other children
may deteriorate
MRFASTC
Family Stress Intervention
• Respite care
• FAS family and peer support groups
• Psychotherapeutic intervention
 Family
therapy
 Behavior therapy
• Provider sensitivity
• Family education
MRFASTC
Family Stress Intervention:
Respite Care
• Short-term, temporary care of children with
•
•
•
disabilities
Provided in the home or in a variety of out of
home settings
Helps families avoid burnout, stress, etc.
If no program available, suggest creating an
informal network of parents for respite care
MRFASTC
Antecedents of Family
Stress: Community Issues
•
•
Lack of knowledgeable medical providers and
school personnel—may lead to delayed diagnosis
and inappropriate interventions
Lack of needed resources




•

Child care programs
Small classroom sizes
Appropriate after-school programs
Financial assistance
Supervised living and employment arrangements
Lack of appropriate criminal justice options
MRFASTC
•
Family Stress Intervention:
Therapy
Family therapy

•

Behavior therapy




•
Help modulate stress
Assist with relationship issues
“Talk” therapy not appropriate
Consider PCIT or BHIS
Assist family with providing structure and
appropriate redirection and consequences
Assist family in planning environmental
modifications
Finding a therapist—developmental disability
experience
MRFASTC
Family Intervention Strategies
• A combination of behavioral and
•
•
environmental modifications may
produce the best results
Early and intensive alcohol and
substance abuse education for the child
Advise the family to model alcohol-free
living
MRFASTC
Family Education
• Advocacy education/resources
• Developmental progression and prevention
of secondary conditions
Increased supervision
 Sex education

• Planning for adulthood
Supervision & Financial
 Employment & Housing

MRFASTC
Parent Stress Intervention:
Support Groups
• Provide a safe, non-judgmental and confidential
•
•
•
outlet for sharing
Help parents cope and develop positive attitudes
about the future
Allow members to help each other through
sharing of knowledge and experience
Offer resources and information not easily
available outside the group
(Parent to Parent of Pennsylvania )
MRFASTC
Special Topics: Adults with
FASD as Parents
• Impulsivity and poor judgment—poor fit with care
•
•
•
of child
Vulnerable to model ineffective parenting
practices
High risk for child neglect
Will need extensive support


Behavior management
Home management
• Multi-generational alcohol use during
pregnancy may occur
MRFASTC
Educational Strategies
• Advocate for appropriate IEP or 504 plan
• May need to use “Other Health Impaired”
•
designation for related symptoms (e.g.,
ADHD) for eligibility
Teacher and administrator education

“Tips
for Teachers” available at:
- www.fasdcenter.samhsa.gov
MRFASTC
8 Magic Keys:
Guidelines for working with
students with FAS
•
•
•
•
Concrete – Speak in concrete terms; Avoid using
words with double meanings
Consistency – Students with FAS do best in
environments with few changes. This includes
language; Use the same key words each time.
Repetition – Teach and re-teach and re-teach.
Routine – When students with FAS know what to
expect, they experience less anxiety and are
better prepared to learn
FAS Alaska, by Deb Evenson & Jan Lutke, 1997
MRFASTC
8 Magic Keys
•
Simplicity – Keep it short and sweet
•
Specific – Say EXACTLY what you mean
•
•
Structure – An environment with structure and
boundaries helps keep students with FAS on track;
It’s “the glue.”
Supervision – Provide constant supervision to model
and help develop appropriate behavior
MRFASTC
“Trying Differently…”
Words to Use:
•
•
•
•
•
•
“Show Me”
“Get your body in control” (instead of
“calm down”)
“Let’s start here” (then demonstrate)
“It’s time to go when…” (provide concrete
example)
“Now”
“Focus”
MRFASTC
•
•
•
•
•
“Trying Differently…”
Key Strategies
Give specific, positive feedback immediately
Minimize materials in a lesson – too much on a worksheet can overstimulate
Encourage the use of “fidget toys”
Reinforce routine and structure with visuals
• Use color coding for different subjects
• Clearly define boundaries with color tape
• When lining up use tape to mark space or paper footprints to
mark how far apart to stand
• Label areas and materials with words and visuals at eye level
Make accommodations where needed
MRFASTC
Approaches to Treatment:
Complementary Alternative
Medicine
• Biofeedback
• Recreational therapy
• Relaxation therapy
• Creative art therapy
• Yoga/exercise
• Vitamins/herbal treatment
MRFASTC
Disability Services
• Search for appropriate services never ends!
• Some individuals may be eligible for SSI
• Early intervention and childhood therapy services


Occupational, physical, speech therapy
Family education and support, respite care
• Services through state systems of care



Supported living
Supported employment
Social and leisure programs
MRFASTC
Adults with FAS
• Guardianship or personal payee
• Possible Brain Injury waiver
• Structure
• Avoid drugs and alcohol
MRFASTC
• FASD Toolbox for Teachers,
•
www.do2learn.com
Trying Differently: A Guide for Daily
Living and Working with FASDs and
Other Brain Differences, Fetal Alcohol
Syndrome Society Yukon, 2005.
MRFASTC
University of Chicago •
•
•
•
•
•
Neurocognitive habilitation program focused on
improving child’s executive functioning
Focused on self-regulation
Car engine metaphor: brain is a like a car engine and can
make their body run in high, low or just-right gear
Intervention included 12 weekly 75-min group therapy
sessions with parents participating in a parent education
group
Results indicated significant improvement in executive
functioning skills of children in the program
www.alertprogram.com
MRFASTC
Resources for Educators
•
•
•
•
Do 2 Learn: http://do2learn.com/disabilities/FASDtoolbox/index.htm
FAS Alaska: 8 Magic Keys http://www.fasalaska.com/8keys.html
NOFAS: http://www.nofas.org
Reach to Teach: Educating Elementary and Middle School
Children with Fetal Alcohol Spectrum Disorders, DHHS Pub.
No. SMA-4222. Rockville, MD: Center for Substance Abuse
Prevention, Substance Abuse and Mental Health Services
Administration, 2007.
•
Fetal Alcohol Syndrome Society Yukon (FASSY): “Trying
Differently: A Guide for Daily Living and Working with FASDs and
Other Brain Differences” (e-mail [email protected])
MRFASTC