Competancy Vb: Primary and Secondary Disabilities in Individuals with FAS through the Life Span What is FAS? ( Reprinted with permission, Streissguth A.P., & Little, R.E. 1994) Brain Function > Structural * HC * Structural (MRI/CT) > Neurologic * Seizures * Gross motor * Fine motor * Quick neurologic screening * Other > Psychometric * Cognitive * Achievement * Adaptation * Psychiatric Diagnosis * Neuropsychological * Language * Motor * Memory > Behavioral/Social Competence Scoring Alcohol Exposure 4-Digit Diagnostic Code for FAS Diagnosis: (1) Fetal Alcohol Syndrome (2) Alcohol Exposure 4-Digit Diagnostic Code for FAS 4 4 4 3 Significant Severe Definite (4) (4) High Risk Moderate Moderate Probable (3) (3) Some Risk Mild Mild Possible (2) (2) Unknown None None Unlikely (1) (1) No Risk Growth Facial Brain Growth Face Brain Alcohol Gestational Sex Differences in Body Mass FAS – Only the tip of the iceberg > Fetal Alcohol Spectrum Disorders- is the broad spectrum of disorders caused by prenatal exposure to alcohol including: * FAS (Fetal Alcohol Syndrome) * FAE (Fetal Alcohol Effects) * ARND (Alcohol Related Neuro-developmental Disorders) * ARBD (Alcohol Related Birth Defects) Differential Diagnosis * If all three areas are affected and abnormalities are present, the disorder is FAS, with or without alcohol confirmation. * Fetal Alcohol Spectrum Disorders (FASD) is defined by the presence of abnormalities in any of the areas, with alcohol confirmation. * Diagnosis of FAS requires a trained physician (National Organization on Fetal Alcohol Syndrome, 2006) Common Disorders Identified with FAS/FASD * Asperger’s Disorder * Attention Deficit Hyperactivity Disorder (ADHD) * Autistic Disorder * Borderline Personality Disorder * Conduct Disorder * Anxiety Disorder * Depression * Learning Disability * Oppositional-Defiant Disorder * Post Traumatic Stress Disorder (PTSD) * Receptive-Expressive Language Disorder Brain Regions Affected by Alcohol Structural Changes in the Brain > In the top picture the brain of a non-surviving child with FAS is shown next to that a non-surviving child’s brain without FAS. > The extent of malformation in the child’s brain was not compatible with life. > The same brain is shown below. Note the lack of internal structures such as the corpus callosum which connects the two hemispheres. Common Brain Abnormalities General Intellectual Performance Neuropsychological Performance Executive Functioning deficits > SELF-REGULATION -The ability to stay in control of emotions; awareness of how other perceive you; use of self-talk strategies to monitor self and behavior > SEQUENCING OF BEHAVIOR - Knowing when and how to start and activity, keeping track of what to do next, initiating tasks. > FLEXIBILITY -The ability to shift tasks smoothly, accept change, deal with transitions appropriately, absence of rigidity. > RESPONSE INHIBITION - The ability to think before acting Executive Function Deficits (cont) > PLANNING -The ability to use mental and action steps to complete tasks, to anticipate what is needed to complete tasks, related to sequencing of behavior. > ORGANIZATION - The ability to keep one’s self and materials organized, in order, predictable, etc. > WORKING MEMORY- Holding info in head while performing action on it. > ATTENTION - Maintaining and switching attention, distractibility. > MOTOR CONTROL -Particularly fine motor. Executive Function and Behavior INFORMATION PROCESSING DIFFICULTIES > Input-recording information > Integration-interpreting input > Memory-storing input for later use > Output-appropriate use of language and motor skills Problem Domains of Individuals with Prenatal Alcohol exposure > Cognition/Intellectual Functioning > Activity and Attention • Hyperactivity • Focusing, encoding, shifting > Learning and Memory • Auditory, spatial, design, and narrative memory • Working memory • Intrusion, perseveration, false-positive errors • Comprehension, math reasoning Problem Domains of Individuals with Prenatal Alcohol exposure (cont) > Language • Social communication • Word comprehension, naming ability, articulation • Expressive and receptive language skills > Motor Abilities • Fine and gross motor dysfunction • Delayed motor development • Speed/precision, grip strength > Processing Abilities • Spatial memory, processing of visual and auditory information • Difficulties in motor control and functioning Problem Domains of Individuals with Prenatal Alcohol exposure (cont) > Other Neuropsychological Abilities/Executive Functioning • Behavioral and emotional regulation-impulsivity, lability • Planning/organization • Abstract thinking/judgment > Sensorimotor Integration > Social Skills and Adaptive behavior > Mental Health Issues Clinical Implications of Impairments for Individuals with FAS/FASD > Poor judgment and decision making, which increases susceptibility to being victimized > Attention deficits, which increase distractibility and lack of focus > Arithmetic disability, which leads to difficulty in handling money > Memory impairment, which makes learning from experience difficult > Difficulty abstracting, which makes it difficult to understand the consequences of one’s behavior Clinical Implications of Impairments for Individuals with FAS/FASD > Disorientations of time and space, which complicate accurately perceiving social cues, missing appointments > Impulsivity and poor self-regulation, which decreases tolerance for frustration, and makes them quick to anger > Poor habituation which results in drowning in stimulation, emotional overload, shutting down and behaving irrationally > Perseveration which leads to doing the same thing over and over again > Difficulty with self reflection which leads to not being able to express ones’ needs and not getting help Secondary Disabilities Resulting from the Primary Disabilities of adolescents/adults with FAS/FASD > 60% have trouble with the law > 50% will be confined in prison, mental institutions, treatment centers > 35% have alcohol and/or drug problems > 61% have disrupted school experience > 49% exhibit inappropriate sexual behavior > Other: joblessness, homelessness, inability to demonstrate effective caretaking and parenting, and increase potential for victimization, need for lifelong supervision (Streissguth, 2004) Reconceptualizing the Behavior of the Child with FAS It may be helpful for professionals, family members, and caretakers to reconceptualize how they view the behavior of an individual with FAS/FASD From seeing: ? To understanding: Common Positive Characteristics of Individuals with FASD Many individuals with FASD are: * Cheerful, friendly and happy * Caring, kind, loyal, nurturing and compassionate * Trusting, loving, determined, committed and persistent * Curious, involved, fair and cooperative * Energetic, hard working and athletic * Artistic, musical and creatively intelligent * Kind with young children and animals. FAS Developmental Overview Infants > Poor sleep-wake cycles/irritability > Failure to thrive (poor weight gain) > Chronic ear infections > Difficulty nursing > Developmental delays > Speech delays > Early Intervention and Special Education services Toddlers > Delay in potty training > Continued developmental delays > Distracted easily > Colds, infections, other illness > Eating (small appetites or sensitivity to food texture) > Fidgeting (meal time or other structured event) > Often exhausted/irritable due to poor sleep > Danger to self-not grasping cause and effect > Usually high maintenance-24/7 Pre-Schoolers > Delayed speech development > Altered motor skills > Attention deficits/Learning deficits > Caregiver concerns: manipulative, does not understand cause and effect, problems with judgement and memory School Age > Bedtime > Making and keeping friends > Difficulties determining body language and expressions > Boundary issues > Attention problems/Impulsive > Easily frustrated/tantrums > Difficulty understanding cause and effect > Caregiver concerns: emotionally volatile, manipulative, unpredictable, increased need for stimulation and excitement Adolescents > Still need limits and protection due to deficits in reasoning, judgment and memory > High risk of being drawn into anti social behavior eg stealing, lying, drugs-”thrill seekers” > Unable to distinguish between friends/enemies; impaired judgment for decisions > Struggle to accept their own disability while trying to prove ability to be independent > Often obsessed by primal impulses-sex, firesetting > Lacks remorse > Negligent of normal hygiene > Extremely vulnerable to suggestions in movies, TV > High risk for school dropout > Unable/unwilling to take responsibility for actions Adults > Moral chameleons > Often exhausted and irritable – poor sleep > Vulnerable to anti-social behavior – find structure and supervision in criminal justice system > Unlikely to follow safety rules – fire hazards, vehicles, basic life needs > Lacks ability to manage money > Incapable of taking daily meds > Vulnerable to panic, depression, suicide, psychosis > Need sheltered environment The NJ FASD Regional Diagnostic Centers > Following the recommendations of the Governor’s Task Force on FASDs, 6 Regional FASD Diagnostic Centers were created in 2002. > These centers work together to meet the mandate from the state, and the recommendations put forth by the Governor’s Task Force. Comprehensive Assessment and Management of Individuals with FAS/FASD Team approach Multi-discipline assessment * Psychosocial history * Physician * Disciplines (Psychologist, Speech, OT/PT, LDTC, Psychiatrist) * Parents/caregivers, Teachers * Social service agencies (DDD, SS, Child protection, drug treatment centers) Case management * Diagnosis * Early intervention and tracking * Stable home environment * Medication * Case manager/mentor in school/home/communities * Support services-family community, educational, vocational * Supervised housing/residential facility * Special education and vocational rehabilitation Best Practice > One prevention model contains seven basic components, form the acronym SCREAMS > Structure: a regular routine with simple rules and concrete, one step instruction > Cues: verbal, visual, or symbolic reminders can counter the memory deficits > Role models: family, friends, TV shows, movies that show healthy behavior and life styles > Environment: minimized chaos, low sensory stimulation, modified to meet individual needs. > Attitude: understanding that behavior problems are primarily due to brain dysfunction > Medications: most often the right combination of meds can increase control over behavior > Supervision: 24/7 monitoring may be needed for life due to poor judgment, impulse control. Guiding principles * Think: “Stretched Toddler”. * Remember: “Individuals with FASD will always need an external brain.” * Acknowledge: Interventions must be useful to, and usable by the individual in order to be an intervention. * Foster: Inter-dependence. * Reflect: Respect. * Promote: Self-worth. Guiding principles * Support: Self-esteem. * Understand: That FASD is not “Chicken Pox.” You can’t catch it and it never goes away. * Shift: From a “non-compliance” model to a “non- competence” model. * Accept: Individuals with FASD do the best they can with what they’ve got at that time. * Believe: You can make a difference.