MRFASTC 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 Poor judgmentEasily victimized Attention deficitsUnfocused/distractible Arithmetic disabilityDifficulty handling money Memory impairmentDifficulty learning from experience Difficulty abstractingDifficulty understanding consequences Disoriented in time/space Difficulty perceiving social cues ImpulsivityPoor frustration tolerance BehaviorOutcomes

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 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 they’ve memorized (e.g., multiplication tables) Misinterpret others’ words, actions, or body movements How do I ‘straighten’ my room? Information Processing :

MRFASTC Typical Difficulties For Persons With an FASD Tend not to learn from mistakes or natural consequences Frequently do not respond to reward systems (points, levels, stickers, etc.) Have difficulty entertaining themselves Naïve, gullible (e.g., may walk off with a stranger) Struggle with abstract concepts (e.g., time, space, money, etc.) I’m late! Executive Function and Decision-Making : Repeatedly break the rules Give in to peer pressure

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’tCan’t BadFrustrated, challenged LazyTried hard LiesConfabulates, fills in Doesn’t tryExhausted or can’t start MeanDefensive, hurt, abused

MRFASTC Reframing From To Fussy, DemandingOversensitive ResistingDoesn’t get it Trying to make me mad Can’t remember Trying to get attention Needing contact and support Acting youngerBeing younger

MRFASTC “Age–Appropriate Behavior” Chronological age w/expectations Age 5 Sit still for 15 min Age 10 Know right from wrong Age 18 Be independent Developmental age expectations Age 5 going on 2 Sit still for going on 6 Developing sense of fairness Age 18 going on 10 Needs structure and guidance

MRFASTC Spectrum of Capacities Expressive Language20 Reading: decoding16 Reading comprehension6 Money and time concepts 8 Emotional maturity6 Physical maturity18 Social skills7 Living skills11 Skill/Characteristic Developmental Age

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

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 decision- making 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 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 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: -

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 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” “Trying Differently…”

MRFASTC “Trying Differently…” Key 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

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, 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

MRFASTC Resources for Educators Do 2 Learn : FAS Alaska: 8 Magic Keys NOFAS: Reach to Teach: Educating Elementary and Middle School Children with Fetal Alcohol Spectrum Disorders, DHHS Pub. No. SMA Rockville, MD: Center for Substance Abuse Prevention, Substance Abuse and Mental Health Services Administration, Fetal Alcohol Syndrome Society Yukon (FASSY): “Trying Differently: A Guide for Daily Living and Working with FASDs and Other Brain Differences” (