FAS Across the Lifespan

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FAS Across the Lifespan

• Joni Bosch, PhD, ARNP
• UIHC Center for Disabilities and Development
• Clinic Genetics

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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.

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Developmental Progression Concerns across the
Lifespan

• An individuals 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.

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Behaviors and Outcomes
Behavior
Outcomes
Poor judgment Easily victimized
Attention deficits Unfocused/distractible
Arithmetic disability Difficulty handling money
Memory impairment Difficulty learning from experience
Difficulty abstracting Difficulty understanding consequences
Disoriented in time/space Difficulty perceiving social cues
Impulsivity Poor frustration tolerance
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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)

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Typical Difficulties ForPersons 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).
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Typical Difficulties ForPersons 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

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Typical Difficulties ForPersons With an FASD
Information Processing

• Have trouble following multiple directions
• Say they understand when they do not
• Have verbal expressive skills that often exceed
  their verbal receptive abilities
• Cannot operationalize what theyve memorized
  (e.g., multiplication tables)
• Misinterpret others words, actions, or body
  movements

How do I straighten my room?
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Typical Difficulties ForPersons With an FASD
Executive Function and Decision-Making

• Repeatedly break the rules
• Give in to peer pressure

• Have difficulty entertaining themselves
• Naïve, gullible (e.g., may walk off with a
  stranger)
• Struggle with abstract concepts (e.g., time,
  space, money, etc.)

Im late! Im late!

• Tend not to learn from mistakes or natural
  consequences
• Frequently do not respond to reward systems
  (points, levels, stickers, etc.)

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Typical Difficulties ForPersons 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 theyre not trying hard
  enough
• May have hygiene problems
• Are aware that theyre different from others
• Often grow up living in multiple homes and
  experience multiple losses

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Universal Protective Factors Intrinsic

• Having a diagnosis of FAS (rather than other
  effects of alcohol exposure)
• IQ score below 70

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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

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Concerns in Infancy and Early Childhood

• Distractibility and hyperactivity
• Difficulty adapting to change
• Difficulty following directions

• Poor habituation
• Irritability in infancy
• Poor visual focus
• Sleep difficulties
• Mild developmental delays

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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

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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

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Concerns in Adolescence

• Poor adaptive functioning
• Confabulationlying 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

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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 problemsdepression, anxiety
• Possible trouble with law, substance abuse if
  unsupervised

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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

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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

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Reframing

• From interpreting behaviors as

• To understanding
• the individual

Malbin (1994)
Wont Cant
Bad Frustrated, challenged
Lazy Tried hard
Lies Confabulates, fills in
Doesnt try Exhausted or cant start
Mean Defensive, hurt, abused
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Reframing
Malbin (1994)

• From

• To

Fussy, Demanding Oversensitive
Resisting Doesnt get it
Trying to make me mad Cant remember
Trying to get attention Needing contact and support
Acting younger Being younger
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AgeAppropriate Behavior

• Chronological age w/expectations

• Developmental age expectations

• Age 5
• Sit still for 15 min
• Age 10
• Know right from wrong
• Age 18
• Be independent

• Age 5 going on 2
• Sit still for 5-10
• 10 going on 6
• Developing sense of fairness
• Age 18 going on 10
• Needs structure and guidance

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Spectrum of Capacities
Skill/Characteristic
Developmental Age

• Expressive Language 20
• Reading decoding 16
• Reading comprehension 6
• Money and time concepts 8
• Emotional maturity 6
• Physical maturity 18
• Social skills 7
• Living skills 11

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Set appropriate expectations that are

• Based upon cognitive functioning
• Think younger
• Developmentally appropriate
• Think more supervision
• Understood by the individual
• Dont assume they got it
• Attainable

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Behavioral and Educational Interventions

• Neuropsychological testing
• Speech/Language evaluation
• Educational interventions
• Special education placement
• 504 plans
• Individualized Education Plan (IEP)

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Behavioral Modification

• STRUCTURE
• Reminders, cues, calendars, checklists
• Rules instead of contingencies
• Forced choice
• Visual schedules
• Lots of review

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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

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Antecedents of Family Stress Parent Issues

• Alcohol use and parenting child with FASD are a
  poor fit
• Prior parenting strategies may not workleading
  to frustration and blame
• Exhaustion plays role in parental decision-making
• Relationships with spouse and other children may
  deteriorate

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Family Stress Intervention

• Respite care
• FAS family and peer support groups
• Psychotherapeutic intervention
• Family therapy
• Behavior therapy
• Provider sensitivity
• Family education

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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

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Antecedents of Family Stress Community Issues

• Lack of knowledgeable medical providers and
  school personnelmay 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

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Family Stress Intervention Therapy

• Family therapy
• Help modulate stress
• Assist with relationship issues
• Behavior therapy
• 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 therapistdevelopmental disability
  experience

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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

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Family Education

• Advocacy education/resources
• Developmental progression and prevention of
  secondary conditions
• Increased supervision
• Sex education
• Planning for adulthood
• Supervision Financial
• Employment Housing

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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 )
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Special Topics Adults with FASD as Parents

• Impulsivity and poor judgmentpoor 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

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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

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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
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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
  Its the glue.
• Supervision Provide constant supervision to
  model and help develop appropriate behavior

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Trying Differently

• Words to Use
• Show Me
• Get your body in control (instead of calm
  down)
• Lets start here (then demonstrate)
• Its time to go when (provide concrete
  example)
• Now
• Focus

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Trying DifferentlyKey Strategies

• Give specific, positive feedback immediately
• Minimize materials in a lesson too much on a
  worksheet can over-stimulate
• 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

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Approaches to Treatment Complementary
Alternative Medicine

• Biofeedback
• Recreational therapy
• Relaxation therapy
• Creative art therapy
• Yoga/exercise
• Vitamins/herbal treatment

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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

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Adults with FAS

• Guardianship or personal payee
• Possible Brain Injury waiver
• Structure
• Avoid drugs and alcohol

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• 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.

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University of Chicago -

• Neurocognitive habilitation program focused on
  improving childs 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

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Resources for Educators

• Do 2 Learn http//do2learn.com/disabilities/FASD
  toolbox/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 fascap_at_klondiker.com)