Assessment

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Assessment Management of FASD
Speakers Susan Adubato, Ph.D. Denise Aloisio,
MD, FAAP
MD Champions Alla Gordina, MD, FAAP Uday
Mehta, MD, MPH, FAAP
American Academy of Pediatrics, New Jersey
Chapter (http//www.aapnj.org/showcontent.aspx?
MenuID999)
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Disclosure Information

• This activity has been jointly sponsored/
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  Trust and AAP/NJ PCORE.
• Disclosure Information Neither Denise Aloisio,
  MD, FAAP, Susan Adubato, PhD nor HRET, AAP/NJ or
  PCORE has any significant financial interest or
  relationship with any manufacture(s) of any
  commercial products(s) discussed in this
  educational presentation.
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  and Educational Trust (HRET) and AAP/NJ NJ
  Pediatric Council on Research and Education. 
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  medical education for physicians.
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  extent of their participation in this activity.

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• Of all the substances of abuse (including
  cocaine, heroin and marijuana), alcohol produces,
  by far, the most serious neurobehavioral effects
  in the fetus
• IOM Report to Congress, 1996

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Case 1 Bob

• Bob presented at the age of 10 years.
• He was adopted from a Russian orphanage at the
  age of 7 months
• He likes to play with his trucks and cars. He is
  social and interactive and is described as having
  a great personality
• He has sleep difficulties, sensory issues and
  eats small amounts of a limited range of foods.

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Case 1 continued

• He has features of ADHD, a lot of worries and
  fears, low frustration tolerance, a high degree
  of reactivity
• He has difficulty with problem solving and
  abstract concepts.
• Prenatal is unknown. He was born at 33 weeks
  gestation with a birth wt. of 4lbs 6oz

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Case 1 continued

• Medical history is unremarkable except for
  recurrent otitis media requiring tube placement
  at 18 months.
• On physical exam ht and wt both less than 5th
  tile.
• Microcephaly with head circumference less than
  3rd tile.
• Face- flattened philtrum, thinned upper lip and
  small eyes.

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Case 1 continued

• IQ testing at 7 yrs with WISC-III Verbal 74
  Performance 60 Full Scale IQ 65
• Updated IQ at 10 years with WISC-IV verbal
  comprehension 73, perceptual reasoning index 51,
  working memory 54, processing speed 56, and full
  scale IQ 50
• Diagnosis FAS alcohol exposure unknown
• Intellectual Disability
• Attention Deficit Hyperactivity Disorder

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Case 1 continued

• Management has included collaboration with school
  personnel to address difficulties in the
  classroom and appropriate placement
• Medications for ADHD and Anxiety he has had side
  effects to many of the stimulants and
  anti-anxiety medications.

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Brain Regions Affected by Alcohol
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FASD

• Fetal Alcohol Spectrum Disorders is an umbrella
  term describing the range of effects that can
  occur in an individual whose mother drank during
  pregnancy. These effects may include physical,
  mental, behavioral, and /or learning disabilities
  with possible lifelong implications. The term
  FASD is not intended for use as a clinical
  diagnosis.
• 
  
• CDC July 2004

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Presentation at different ages-
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Infants

• Poor habituation/sleep-wake cycles
• Irritability/exaggerated startle
• Failure to thrive (poor weight gain)
• Chronic ear infections
• Difficulty nursing/poor sucking response
• Poor/superficial bonding with caregivers
• Developmental delays
• Speech delays low muscle tone

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Toddlers

• Continued developmental delays potty training
• 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

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Pre-Schoolers

• Delayed speech development
• Altered motor skills
• Difficulty following directions
• Attention deficits/Learning deficits
• Exaggerated response to sensations (bump into
  child- she feels she was hit or shoved)
• Difficulty adapting to changes in environment
• Caregiver concerns manipulative, does not
  understand cause and effect, problems with
  judgment and memory, disobedience

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School Age

• Bedtime
• Making and keeping friends
• Difficulties determining body language and
  expressions
• Difficulties separating fact from fantasy
• 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, disconnected to
  feelings/limited empathy

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Adolescents

• Still need limits and protection due to deficits
  in reasoning, judgment and memory
• High risk of being drawn into anti social
  behavior e.g. stealing, lying, drugs-thrill
  seekers
• Unable to distinguish between friends/enemies
  impaired judgment for decisions faulty logic
• Struggle to accept their own disability while
  trying to prove ability to be independent
• Often obsessed by primal impulses-sex, fire
  setting
• Lacks remorse
• Negligent of normal hygiene
• Extremely vulnerable to suggestions in movies, TV
• High risk for school dropout academic ceiling
  reached usually 4th grade for reading and 3rd
  grade for math
• Unable/unwilling to take responsibility for
  actions egocentric

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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
• Social/sexual/financial exploitation social
  isolation
• Lacks ability to manage money
• Incapable of taking daily meds
• Vulnerable to panic, depression, suicide
  (Huggins, et.al-200823), psychosis
• Need sheltered environment
• Think younger- 2/3 chronological age
• Chudley, et al(2007) Adults with FASD have
  higher rates of social problems, executive
  functioning and psychopathology when compared to
  general population.

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Case 1 Ted

• Presented for developmental evaluation at the age
  of 8 years
• History of behavioral difficulties
• Was irritable as a baby, had sleep problems,
  didnt grow well and as a toddler he was very
  active
• He was friendly and social but often impulsive
• He was asked to leave three different preschool
  programs because of difficulties following rules
  and being disruptive
• He was also aggressive at times

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Case 1 continued

• In Kindergarten, he had difficulty learning his
  letters, he could not sit in group for story time
  and was disruptive
• He threw things when upset and had injured
  another student on the playground
• His pediatrician recommended further assessment

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More difficulties for Ted

• Ted didnt seem to learn from common discipline
  techniques, and would repeat the same wrong
  behaviors over and over
• He had no friends and was not allowed to go on
  the class trip
• First grade was even worse and three months into
  the year he was evaluated by the school team and
  placed in a smaller class

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Teds Assessment

• Ted presented to the Developmental Pediatrician
  when previous history was obtained
• Birth history was obtained and Teds mother
  admitted to drinking some beer regularly during
  pregnancy, she also smoked cigarettes and was on
  medication for a respiratory infection
• Physical exam revealed some facial features
  including small eyes, flat philtrum and thin
  upper lip. Head circumference was less than the 5

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Problem Domains of Individuals with Prenatal
Alcohol Exposure

• Cognition/Intellectual Functioning
• Activity and Attention (ADHD)
• Hyperactivity
• Focusing, encoding, shifting
• Learning and Memory
• Auditory, spatial, design, and narrative memory
• Working memory
• Intrusion, perseveration, false-positive errors
• Comprehension, math reasoning

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Problem Domains of Individuals with Prenatal
Alcohol Exposure

• 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

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Problem Domains of Individuals with Prenatal
Alcohol Exposure

• 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

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Case 2 Debbie

• Debbie presented at 12 years with a diagnosis of
  FAS, ADHD and Intellectual Disability
• She is rough with the family pets and even killed
  two of them
• She steals items from other children in the
  family and school
• The family has to lock all the doors to rooms in
  the house

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Case 2 continued

• Medical history significant for being born
  extremely prematurely at 24 weeks gestation
• There was known exposure to alcohol prenatally
• She had an Intraventricular hemorrhage and
  congenital cardiac defect ASD repaired at 4
  years.
• She has asthma treated with medications
• There was a question of seizures but EEG was
  normal

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Case 2 continued

• On physical exam, height and weight have been
  consistently below the 3rd tile.
• Head circumference less than 3rd tile
• Facial features consistent with FAS

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IQ
IQ was done at 12 years old with the WISC-IV
verbal comprehension index 59, Perceptual
reasoning index 49, working memory index 65,
processing speed index 70, Full Scale IQ is 51
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Case 2 continued

• Management involves
• Behavioral family services in home
• Medications Strattera, risperdone recently
  added, Buspar
• Family is involved with services through their
  church.

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Clinical Implications of Impairments for
Individuals with FAS/FASD
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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 ones behavior

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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

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Secondary Disabilities Resulting from the Primary
Disabilities of Individuals with FAS/FASD

• 60 have trouble with the law
• 50 will be confined in prison ,mental
  institutions, and treatment centers
• 35 have alcohol and/or drug problems
• -Streissguth 2004

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Secondary Disabilities Resulting from the Primary
Disabilities of Individuals with FAS/FASD

• 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

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Universal Protective Factors

• Early diagnosis
• Stable, nurturing home environment
• No violence/victimization
• Early intervention services
• DDD services
• Streissguth, 2004

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Differential Diagnosis of CNS and Behavioral
Feature Found in Fetal Alcohol Syndrome Dan
Dubovsky-FASD Center of Excellence, 2011
Syndrome Similarities to FAS Differences from FAS
Fragile X syndrome Attention problems, hyperactivity, speech deficits Hand flapping, poor eye contact, more severe intellectual disability, autism
Williams syndrome Mild prenatal growth deficiency, microcephaly, mild intellectual disability, short palpebral fissures, upturned nose, long philtrum Aortic or pulmonary stenosis, hoarse voice, high relative language ability
Noonan syndrome Short stature, mild intellectual disability, ptosis, upturned nose Webbed neck, low posterior hairline, shield chest, pulmonic stenosis, cryptorchidism
22q11 deletion syndrome Learning disabilities, IQ range from low normal to mild intellectual disability, speech deficits 10 with psychiatric disorders, strong social skills

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Common Disorders Identified with FASD

• Anxiety
• Aspergers Disorder
• Attention Deficit Hyperactivity Disorder (ADHD)
• Autism
• Borderline Personality Disorder
• Conduct Disorder
• Depression

• Eating Disorders
• Learning Disability
• Oppositional-Defiant Disorder
• Post Traumatic Stress Disorder (PTSD)
• Reactive Attachment Disorders
• Receptive-Expressive Language Disorder

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Similarities Between FASD and Autism

• Developmental disabilities that affect normal
  brain function, development, and social
  interaction
• Difficulty developing peer relationships
• Difficulty with the give and take of social
  interactions
• Impairments in the use and understanding of body
• language to regulate social interaction
• Abnormal sensitivity to sensory stimuli,
  including an over- or under-sensitivity to pain

Dan Dubovsky-FASD Center of Excellence, 2011
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Major Differences Between FASD and Autism

• FASD

• Autism

• Can express a range of emotion
• Microcephaly more common
• Superficially social

• Restricted in emotional expression
• Macrocephaly more common
• Difficult or impossible to relate to others in a
  meaningful way

Dan Dubovsky-FASD Center of Excellence, 2011
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Major Differences Between FASD and Autism

• FASD

• Autism

• Difficulty in verbal receptive language
  expressive language is more intact as the person
  ages
• Repetitive body movements not seen may have fine
  and gross motor coordination and/or balance
  problems

• Difficulty in both expressive and receptive
  language
• Repetitive body movements e.g., hand flapping,
  and/or abnormal posture e.g., toe walking

Dan Dubovsky-FASD Center of Excellence, 2011
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Possible Misdiagnoses and/or Co-occurring
Disorders for Individuals with FASD

• ADHD
• Oppositional Defiant Disorder
• Depression
• Bipolar

Dan Dubovsky-FASD Center of Excellence, 2011
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Comparing FASD, ADHD, ODD
FASD ADHD ODD
Behavior
Underlying cause for the behavior May or may not take in the information Cannot recall the information when needed Cannot remember what to do Takes in the information Can recall the information when needed Gets distracted Takes in the information Can recall the information when needed Chooses not to do what they are told
Intervention for the behavior Provide one direction at a time Limit stimuli and provide cues Provide positive sense of control, limits, and consequences
Dan Dubovsky-FASD Center of Excellence, 2011
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Comparing FASD, Adolescent Depression and
Adolescent Bipolar Disorder
FASD Adolescent Depression Adolescent Bipolar Disorder
Acting out, antisocial behavior Acting out, antisocial behavior Acting out, antisocial behavior
Misreading social cues difficulty communicating thoughts and feelings Depression Mania or hypomania
Provide a mentor to model positive behaviors utilize a lot of role playing Psychotherapy to address issues protect from harm medication (antidepressants) with careful monitoring Psychotherapy to address issues protect from harm medication (mood stabilizer)
Dan Dubovsky-FASD Center of Excellence, 2011
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Managing Co-existing Disorders

• ADHD
• Mood Disorders
• Oppositional Defiant Disorder
• The role of medications
• Start low, go slow
• Monitor closely
• May have opposite effect

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Reconceptualizing the Behavior of the Individual
with FAS

• Professionals, family members, and caretakers
  need to reconceptualize how we view the behavior
  of an individual with FAS/FASD

From seeing ? To
understanding
Wont ? Cant
Lazy ? Tries hard
Lies ? Fills in
Doesnt try ? Exhausted or cant start
Doesnt care ? Cant show
feelings Refuses to sit still ?
Over stimulated Fussy, demanding
? Oversensitive
Resisting ? Doesnt get it
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You Can Make A Difference !

• 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.

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You Can Make A Difference !

• Support Self-esteem.
• Understand That FASD is not Chicken Pox.
  You cant 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 theyve got at that time.
• Believe You can make a difference.

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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, paired with
  examples
• 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.
• Teresa Kellerman, Director of the FAS Community
  Resource Center, Tucson Arizona

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New Jersey Regional Diagnostic Centers

• Six Regional Diagnostic treatment and
  educational centers were established in New
  Jersey in 2002.
• Identify
• Screen
• Diagnose
• Case Management Referral
• Education Outreach
• Beintheknownj.org

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Comprehensive Assessment and Management of
Individuals with FAS/FASD

• Team approach
• Multi-disciplinary assessment
• Psychosocial history
• Physician
• Disciplines (Mental health, speech, OT/PT, LD)
• Parents/caregivers
• Social service agencies (DDD, SS, Child
  protective, 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

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• POLICY STATEMENTS
• Since 1966, AMA and APA have recognized
  alcoholism as disease
• AMA, AAP, ACOG, CDC, NIAAA, March of Dimes, and
  NOFAS all have policies regarding drinking during
  pregnancy
• AMA urges physicians to be alert to possible
  alcohol related problems in women and to screen
  all patients for possible alcohol abuse and
  dependence.

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Be good to me...                Stay alcohol
free!
A few drinks can Last forever  
No safe time. No safe amount. No
safe alcohol. Period. NIAAA/NOFAS
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References

• Astley, S., Aylward, E., Carmichael-Olson, H.,
  et. al. (2009). Magnetic resonance imaging
  outcomes from a comprehensive magnetic resonance
  study of children with Fetal Alcohol Spectrum
  Disorders. Alcoholism Clinical and Experimental
  research, 33 (10) 1671-1689.
• Hellemans, KS, Silwowska, JH, Verma, P., and
  Weinburg, J. (2010). Prenatal alcohol exposure
  fetal programming and later life vulnerability to
  stress, depression, and anxiety disorders.
  Neuroscience Biobehavior Review, 34, (6),791-807
  
• Larkby, CA, Goldschmidt, L, Hanusa, BH and Day,
  N. (2011). Prenatal alcohol exposure is
  associated with conduct disorder in adolescence
  Findings from a birth cohort. Journal of the
  Academy of Child Adolescent Psychiatry,
  50(3),March 262-271.
• Li, L Coles, CD., Lynch, ME, et al.,(2009).
  Voxelwise and skeleton-based region of interest
  analysis of fetal alcohol syndrome and fetal
  alcohol spectrum disorders in young adults. Human
  Brain Mapping, PMID 19278010.
• Mattson, S, and Riley, E. (2011). The quest for
  a neurodevelopmental profile of heavy prenatal
  alcohol exposure. Research Health, 34 (1),
  51-56.
• Wetherill, L and Foroud, T (2011). Understanding
  the effects of prenatal alcohol exposure using
  three dimensional Facial Imaging. Alcohol
  Research Health, 34 (1),38-42.
• Feldman, HS, Jones, KL, Lindsay,S, Slyman,D.,
  Klonoff-Cohen H, Kao,K., Rao, Chambers,C.
  (2012).  Patterns of prenatal alcohol exposure
  and associated non-characteristic minor
  structural malformations A prospective study.
  Already on-line.  To be published Am J Med Part
  A 155 2949-2955 (April)
• WHO Factsheet 349 (2011).

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Websites

• American Academy of Pediatrics, New Jersey
  Chapter http//www.aapnj.org/
• National Organization on Fetal Alcohol Syndrome
  http//www.nofas.org/
• Fetal Alcohol Spectrum Disorder Center of
  Excellence http//www.fasdcenter.samhsa.gov/
• Centers for Disease Control National Center on
  Birth Defects and DDs http//www.cdc.gov/ncbddd/f
  eatures/birthdefects-dd-keyfindings.html
• Fetal Alcohol Disorders Society
  
  http//www.faslink.org/
• Fetal Alcohol Syndrome Consultation, Education
  and Training Services, Inc. http//www.fascets.or
  g/
• Be In The Know NJ
  
  http//beintheknownj.org/
• Article Researchers quantify the damage of
  alcohol by timing and exposure during pregnancy
  http//www.eurekalert.org/pub_releases/2012-01/ace
  -rqt010812.php

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Full Journals

• Alcohol Research and Health, Volume 34(1),
  2011-FASD
• Journal of Psychiatry and Law, Volume 38(4),
  Winter 20120 (one of 2 volumes on FASD)

Books
Prenatal alcohol use and FASD Diagnosis,
assessment and new directions in research and
multimodal treatment- Bentham Science E book
edited by Adubato and Cohen- September,
2011 Fetal Alcohol Spectrum Disorder Management
and Policy Perspectives of FASD (sic) edited by
Riley, et.al., 2011 Wiley-Blackwell
Publishers Prevalence of Fetal Alcohol Spectrum
Disorders (sic) FASD Who is Responsible? edited
by Clarrin, et.al., 2011 Wiley-Blackwell
Publishers
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Contact Information Speakers- Susan Adubato,
PhD - adubatsu_at_umdnj.edu Denise Aloisio, MD, FAAP
- DAloisio_at_meridianhealth.com MD Champions-
Alla Gordina, MD, FAAP- drgordina_at_globalpediatric
s.net Uday Mehta, MD, MPH, FAAP-
UMehta_at_childrens-specialized.org
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