assessment & management of fasd speakers: susan adubato, ph.d. denise aloisio, md, faap md...

Assessment & Management of FASDAssessment & Management of FASD

Speakers: Speakers:

Susan Adubato, Ph.D.Susan Adubato, Ph.D.

Denise Aloisio, MD, FAAPDenise Aloisio, MD, FAAP

MD Champions: MD Champions:

Alla Gordina, MD, FAAP Alla Gordina, MD, FAAP

Uday Mehta, MD, MPH, FAAPUday Mehta, MD, MPH, FAAP

American Academy of Pediatrics, New Jersey Chapter

(http://www.aapnj.org/showcontent.aspx?MenuID=999)

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This activity has been jointly sponsored/ co-provided by Health and Research and Education Trust and AAP/NJ & This activity has been jointly sponsored/ co-provided by Health and Research and Education Trust and AAP/NJ & PCORE.PCORE.

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HRET designates this live activity for a maximum of HRET designates this live activity for a maximum of 1.251.25 AMA PRA Category 1 Credits AMA PRA Category 1 CreditsTMTM. Physicians should only . Physicians should only claim credit commensurate with the extent of their participation in this activity.claim credit commensurate with the extent of their participation in this activity.

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Of all the substances of abuse Of all the substances of abuse (including cocaine, heroin and (including cocaine, heroin and

marijuana), alcohol produces, by far, marijuana), alcohol produces, by far, the most serious neurobehavioral the most serious neurobehavioral

effects in the fetus”effects in the fetus”

IOM Report to Congress, 1996

33

Case 1: BobCase 1: Bob

44

Bob presented at the age of 10 years.Bob presented at the age of 10 years.

He was adopted from a Russian orphanage at He was adopted from a Russian orphanage at the age of 7 monthsthe age of 7 months

He likes to play with his trucks and cars. He is He likes to play with his trucks and cars. He is social and interactive and is described as social and interactive and is described as having a great personality having a great personality

He has sleep difficulties, sensory issues and He has sleep difficulties, sensory issues and eats small amounts of a limited range of foods. eats small amounts of a limited range of foods.

He has features of ADHD, a lot of worries and He has features of ADHD, a lot of worries and fears, low frustration tolerance, a high degree fears, low frustration tolerance, a high degree of reactivityof reactivity

He has difficulty with problem solving and He has difficulty with problem solving and abstract concepts.abstract concepts.

Prenatal is unknown. He was born at 33 weeks Prenatal is unknown. He was born at 33 weeks gestation with a birth wt. of 4lbs 6ozgestation with a birth wt. of 4lbs 6oz

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Case 1: continuedCase 1: continued

Medical history is unremarkable except for Medical history is unremarkable except for recurrent otitis media requiring tube placement recurrent otitis media requiring tube placement at 18 months.at 18 months.

On physical exam: ht and wt both less than 5On physical exam: ht and wt both less than 5 thth %tile.%tile.

Microcephaly with head circumference less Microcephaly with head circumference less than 3than 3rdrd %tile. %tile.

Face- flattened philtrum, thinned upper lip and Face- flattened philtrum, thinned upper lip and small eyes. small eyes.

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IQ testing at 7 yrs with WISC-III Verbal 74 IQ testing at 7 yrs with WISC-III Verbal 74 Performance 60 Full Scale IQ 65Performance 60 Full Scale IQ 65

Updated IQ at 10 years with WISC-IV: verbal Updated IQ at 10 years with WISC-IV: verbal comprehension 73, perceptual reasoning index comprehension 73, perceptual reasoning index 51, working memory 54, processing speed 56, 51, working memory 54, processing speed 56, and full scale IQ 50and full scale IQ 50

Diagnosis: FAS: alcohol exposure unknownDiagnosis: FAS: alcohol exposure unknown

• Intellectual DisabilityIntellectual Disability

• Attention Deficit Hyperactivity DisorderAttention Deficit Hyperactivity Disorder88


Management has included collaboration with Management has included collaboration with school personnel to address difficulties in the school personnel to address difficulties in the classroom and appropriate placementclassroom and appropriate placement

Medications for ADHD and Anxiety; he has Medications for ADHD and Anxiety; he has had side effects to many of the stimulants and had side effects to many of the stimulants and anti-anxiety medications. anti-anxiety medications.

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Brain Regions Affected by AlcoholBrain Regions Affected by Alcohol

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

CDC July 2004

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FASDFASD

Presentation at different ages-Presentation at different ages-

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InfantsInfants Poor habituation/sleep-wake cyclesPoor habituation/sleep-wake cycles Irritability/exaggerated startleIrritability/exaggerated startle Failure to thrive (poor weight gain)Failure to thrive (poor weight gain) Chronic ear infectionsChronic ear infections Difficulty nursing/poor sucking Difficulty nursing/poor sucking

responseresponse Poor/superficial bonding with Poor/superficial bonding with

caregiverscaregivers Developmental delaysDevelopmental delays Speech delays; low muscle toneSpeech delays; low muscle tone

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ToddlersToddlers Continued developmental delays; potty trainingContinued developmental delays; potty training Distracted easilyDistracted easily Colds, infections, other illnessColds, infections, other illness Eating (small appetites or sensitivity to food Eating (small appetites or sensitivity to food

texture)texture) Fidgeting (meal time or other structured event)Fidgeting (meal time or other structured event) Often exhausted/irritable due to poor sleepOften exhausted/irritable due to poor sleep Danger to self-not grasping cause and effectDanger to self-not grasping cause and effect Usually high maintenance-24/7Usually high maintenance-24/7

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Pre-SchoolersPre-Schoolers Delayed speech developmentDelayed speech development Altered motor skillsAltered motor skills Difficulty following directionsDifficulty following directions Attention deficits/Learning deficitsAttention deficits/Learning deficits Exaggerated response to sensations (bump into Exaggerated response to sensations (bump into

child- she feels she was hit or shoved)child- she feels she was hit or shoved) Difficulty adapting to changes in environmentDifficulty adapting to changes in environment Caregiver concerns: manipulative, does not Caregiver concerns: manipulative, does not

understand cause and effect, problems with understand cause and effect, problems with judgment and memory, disobedience judgment and memory, disobedience

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School AgeSchool Age BedtimeBedtime Making and keeping friendsMaking and keeping friends Difficulties determining body language and expressionsDifficulties determining body language and expressions Difficulties separating fact from fantasyDifficulties separating fact from fantasy Boundary issuesBoundary issues Attention problems/impulsiveAttention problems/impulsive Easily frustrated/tantrumsEasily frustrated/tantrums Difficulty understanding cause and effectDifficulty understanding cause and effect Caregiver concerns: emotionally volatile, manipulative, Caregiver concerns: emotionally volatile, manipulative,

unpredictable, increased need for stimulation and excitement, unpredictable, increased need for stimulation and excitement, disconnected to feelings/limited empathydisconnected to feelings/limited empathy

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AdolescentsAdolescents Still need limits and protection due to deficits in reasoning, Still need limits and protection due to deficits in reasoning,

judgment and memoryjudgment and memory High risk of being drawn into anti social behavior e.g. High risk of being drawn into anti social behavior e.g.

stealing, lying, drugs-”thrill seekers”stealing, lying, drugs-”thrill seekers” Unable to distinguish between friends/enemies; impaired Unable to distinguish between friends/enemies; impaired

judgment for decisions; faulty logicjudgment for decisions; faulty logic Struggle to accept their own disability while trying to prove Struggle to accept their own disability while trying to prove

ability to be independentability to be independent Often obsessed by primal impulses-sex, fire settingOften obsessed by primal impulses-sex, fire setting Lacks remorseLacks remorse Negligent of normal hygieneNegligent of normal hygiene Extremely vulnerable to suggestions in movies, TVExtremely vulnerable to suggestions in movies, TV High risk for school dropout; academic ceiling reached: High risk for school dropout; academic ceiling reached:

usually 4usually 4thth grade for reading and 3 grade for reading and 3rdrd grade for math grade for math Unable/unwilling to take responsibility for actions; Unable/unwilling to take responsibility for actions;

egocentricegocentric 1717

Adults*Adults* Moral chameleonsMoral chameleons Often exhausted and irritable – poor sleepOften exhausted and irritable – poor sleep Vulnerable to anti-social behavior – find structure and supervision in Vulnerable to anti-social behavior – find structure and supervision in

criminal justice systemcriminal justice system Unlikely to follow safety rules – fire hazards, vehicles, basic life needsUnlikely to follow safety rules – fire hazards, vehicles, basic life needs Social/sexual/financial exploitation; social isolationSocial/sexual/financial exploitation; social isolation Lacks ability to manage moneyLacks ability to manage money Incapable of taking daily medsIncapable of taking daily meds Vulnerable to panic, depression, suicide (Huggins, et.al-2008:23%), Vulnerable to panic, depression, suicide (Huggins, et.al-2008:23%),

psychosispsychosis Need sheltered environmentNeed sheltered environment Think younger- 2/3 chronological ageThink 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: TedCase 1: Ted

Presented for developmental evaluation at the age of 8 yearsPresented for developmental evaluation at the age of 8 years

History of behavioral difficulties History of behavioral difficulties

Was irritable as a baby, had sleep problems, didn’t grow well Was irritable as a baby, had sleep problems, didn’t grow well and as a toddler he was very activeand as a toddler he was very active

He was friendly and social but often impulsiveHe was friendly and social but often impulsive

He was asked to leave three different preschool programs He was asked to leave three different preschool programs because of difficulties following rules and being disruptivebecause of difficulties following rules and being disruptive

He was also aggressive at timesHe was also aggressive at times

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In Kindergarten, he had difficulty learning his In Kindergarten, he had difficulty learning his letters, he could not sit in group for story time letters, he could not sit in group for story time and was disruptiveand was disruptive

He threw things when upset and had injured He threw things when upset and had injured another student on the playgroundanother student on the playground

His pediatrician recommended further His pediatrician recommended further assessment assessment


2020

More difficulties for TedMore difficulties for Ted

Ted didn’t seem to learn from common discipline Ted didn’t seem to learn from common discipline techniques, and would repeat the same wrong techniques, and would repeat the same wrong behaviors over and overbehaviors over and over

He had no friends and was not allowed to go on the He had no friends and was not allowed to go on the class tripclass trip

First grade was even worse and three months into the First grade was even worse and three months into the year he was evaluated by the school team and placed year he was evaluated by the school team and placed in a smaller classin a smaller class

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Ted’s AssessmentTed’s Assessment

Ted presented to the Developmental Pediatrician Ted presented to the Developmental Pediatrician when previous history was obtainedwhen previous history was obtained

Birth history was obtained and Ted’s mother admitted Birth history was obtained and Ted’s mother admitted to drinking some beer regularly during pregnancy, to drinking some beer regularly during pregnancy, she also smoked cigarettes and was on medication for she also smoked cigarettes and was on medication for a respiratory infectiona respiratory infection

Physical exam revealed some facial features Physical exam revealed some facial features including: small eyes, flat philtrum and thin upper lip. including: small eyes, flat philtrum and thin upper lip. Head circumference was less than the 5%Head circumference was less than the 5%

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Problem Domains of Individuals with Problem Domains of Individuals with Prenatal Alcohol ExposurePrenatal Alcohol Exposure

Cognition/Intellectual FunctioningCognition/Intellectual Functioning

Activity and Attention (ADHD)Activity and Attention (ADHD) HyperactivityHyperactivity Focusing, encoding, shiftingFocusing, encoding, shifting

Learning and MemoryLearning and Memory Auditory, spatial, design, and narrative memoryAuditory, spatial, design, and narrative memory Working memoryWorking memory Intrusion, perseveration, false-positive errorsIntrusion, perseveration, false-positive errors Comprehension, math reasoningComprehension, math reasoning

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LanguageLanguage Social communicationSocial communication Word comprehension, naming ability, articulationWord comprehension, naming ability, articulation Expressive and receptive language skills Expressive and receptive language skills

Motor Abilities Motor Abilities Fine and gross motor dysfunctionFine and gross motor dysfunction Delayed motor developmentDelayed motor development Speed/precision, grip strengthSpeed/precision, grip strength

Processing AbilitiesProcessing Abilities Spatial memory, processing of visual and auditory Spatial memory, processing of visual and auditory

informationinformation Difficulties in motor control and functioningDifficulties in motor control and functioning


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Other Neuropsychological Abilities/Executive FunctioningOther Neuropsychological Abilities/Executive Functioning Behavioral and emotional regulation-impulsivity, labilityBehavioral and emotional regulation-impulsivity, lability Planning/organizationPlanning/organization Abstract thinking/judgmentAbstract thinking/judgment

Sensorimotor IntegrationSensorimotor Integration

Social Skills and Adaptive BehaviorSocial Skills and Adaptive Behavior

Mental Health IssuesMental Health Issues


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Case 2: Debbie Case 2: Debbie

Debbie presented at 12 years with a diagnosis of Debbie presented at 12 years with a diagnosis of FAS, ADHD and Intellectual DisabilityFAS, ADHD and Intellectual Disability

She is rough with the family pets and even killed two She is rough with the family pets and even killed two of them of them

She steals items from other children in the family and She steals items from other children in the family and schoolschool

The family has to lock all the doors to rooms in the The family has to lock all the doors to rooms in the house house

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Medical history significant for being born extremely Medical history significant for being born extremely prematurely at 24 weeks gestationprematurely at 24 weeks gestation

There was known exposure to alcohol prenatallyThere was known exposure to alcohol prenatally

She had an Intraventricular hemorrhage and She had an Intraventricular hemorrhage and congenital cardiac defect ASD repaired at 4 years. congenital cardiac defect ASD repaired at 4 years.

She has asthma treated with medicationsShe has asthma treated with medications

There was a question of seizures but EEG was normalThere was a question of seizures but EEG was normal

Case 2: continued Case 2: continued

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On physical exam, height and weight have been On physical exam, height and weight have been consistently below the 3consistently below the 3rdrd %tile. %tile.

Head circumference less than 3Head circumference less than 3rdrd %tile %tile

Facial features consistent with FASFacial features consistent with FAS


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IQIQ

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

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Management involves:Management involves: Behavioral family services in homeBehavioral family services in home

Medications: Strattera, risperdone recently Medications: Strattera, risperdone recently added, Busparadded, Buspar

Family is involved with services through their Family is involved with services through their church.church.


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Clinical Implications of Impairments Clinical Implications of Impairments for Individuals with FAS/FASDfor Individuals with FAS/FASD

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Poor judgment and decision making, which increases Poor judgment and decision making, which increases susceptibility to being victimizedsusceptibility to being victimized

Attention deficits, which increase distractibility and lack of Attention deficits, which increase distractibility and lack of focusfocus

Arithmetic disability, which leads to difficulty in handling Arithmetic disability, which leads to difficulty in handling moneymoney

Memory impairment, which makes learning from experience Memory impairment, which makes learning from experience difficultdifficult

Difficulty abstracting, which makes it difficult to understand Difficulty abstracting, which makes it difficult to understand the consequences of one’s behaviorthe consequences of one’s behavior

Clinical Implications of Impairments for Clinical Implications of Impairments for Individuals with FAS/FASDIndividuals with FAS/FASD

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Clinical Implications of Impairments for Clinical Implications of Impairments for Individuals with FAS/FASDIndividuals with FAS/FASD

Disorientations of time and space, which complicate accurately Disorientations of time and space, which complicate accurately perceiving social cues, missing appointmentsperceiving social cues, missing appointments

Impulsivity and poor self-regulation, which decreases tolerance Impulsivity and poor self-regulation, which decreases tolerance for frustration, and makes them quick to angerfor frustration, and makes them quick to anger

Poor habituation which results in drowning in stimulation, Poor habituation which results in drowning in stimulation, emotional overload, shutting down and behaving irrationallyemotional overload, shutting down and behaving irrationally

Perseveration which leads to doing the same thing over and over Perseveration which leads to doing the same thing over and over againagain

Difficulty with self reflection which leads to not being able to Difficulty with self reflection which leads to not being able to express ones’ needs and not getting helpexpress ones’ needs and not getting help

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

60% have trouble with the law60% have trouble with the law

50% will be confined in prison ,mental institutions, and 50% will be confined in prison ,mental institutions, and treatment centerstreatment centers

35% have alcohol and/or drug problems35% have alcohol and/or drug problems

-Streissguth 2004-Streissguth 2004

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

61% have disrupted school experience61% have disrupted school experience

49% exhibit inappropriate sexual behavior49% exhibit inappropriate sexual behavior

Other:Other: joblessness, homelessness, inability to joblessness, homelessness, inability to demonstrate effective caretaking and parenting, demonstrate effective caretaking and parenting, and increase potential for victimization, need for and increase potential for victimization, need for lifelong supervisionlifelong supervision

Streissguth 2004Streissguth 2004 3737

Universal Protective FactorsUniversal Protective Factors

• Early diagnosisEarly diagnosis

• Stable, nurturing home environmentStable, nurturing home environment

• No violence/victimizationNo violence/victimization

• Early intervention servicesEarly intervention services

• DDD servicesDDD services

Streissguth, 2004Streissguth, 2004

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Differential Diagnosis of CNS and Behavioral Feature Found in Fetal Alcohol SyndromeDifferential Diagnosis of CNS and Behavioral Feature Found in Fetal Alcohol Syndrome

Dan Dubovsky-FASD Center of Excellence, 2011Dan Dubovsky-FASD Center of Excellence, 2011

Syndrome Similarities to FAS Differences from FAS

Fragile X Fragile X syndromesyndrome

Attention problems, Attention problems, hyperactivity, speech deficitshyperactivity, speech deficits

Hand flapping, poor eye Hand flapping, poor eye contact, more severe contact, more severe intellectual disability, intellectual disability, autismautism

Williams Williams syndromesyndrome

Mild prenatal growth deficiency, Mild prenatal growth deficiency, microcephaly, mild microcephaly, mild intellectual disability, short intellectual disability, short palpebral fissures, upturned palpebral fissures, upturned nose, long philtrumnose, long philtrum

Aortic or pulmonary Aortic or pulmonary stenosis, hoarse voice, stenosis, hoarse voice, high relative language high relative language abilityability

Noonan Noonan syndromesyndrome

Short stature, mild intellectual Short stature, mild intellectual disability, ptosis, upturned disability, ptosis, upturned nosenose

Webbed neck, low posterior Webbed neck, low posterior hairline, shield chest, hairline, shield chest, pulmonic stenosis, pulmonic stenosis, cryptorchidismcryptorchidism

22q11 deletion 22q11 deletion syndromesyndrome

Learning disabilities, IQ range Learning disabilities, IQ range from low normal to mild from low normal to mild intellectual disability, speech intellectual disability, speech deficitsdeficits

10% with psychiatric 10% with psychiatric disorders, strong social disorders, strong social skillsskills

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Common Disorders Identified with FASDCommon Disorders Identified with FASD

AnxietyAnxiety Asperger’s DisorderAsperger’s Disorder Attention Deficit Attention Deficit

Hyperactivity Disorder Hyperactivity Disorder (ADHD)(ADHD)

Autism Autism Borderline Personality Borderline Personality

DisorderDisorder Conduct DisorderConduct Disorder DepressionDepression

Eating DisordersEating Disorders Learning DisabilityLearning Disability Oppositional-Defiant Oppositional-Defiant

DisorderDisorder Post Traumatic Stress Post Traumatic Stress

Disorder (PTSD)Disorder (PTSD) Reactive Attachment Reactive Attachment

DisordersDisorders Receptive-Expressive Receptive-Expressive

Language DisorderLanguage Disorder4040

Similarities Between FASD and Autism Similarities Between FASD and Autism

Developmental disabilities that affect normal brain Developmental disabilities that affect normal brain function, development, and social interaction function, development, and social interaction

Difficulty developing peer relationships Difficulty developing peer relationships

Difficulty with the give and take of social interactions Difficulty with the give and take of social interactions

Impairments in the use and understanding of body Impairments in the use and understanding of body

language to regulate social interaction language to regulate social interaction

Abnormal sensitivity to sensory stimuli, including an Abnormal sensitivity to sensory stimuli, including an over- or under-sensitivity to painover- or under-sensitivity to pain

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FASDFASD

Can express a range of Can express a range of emotionemotion

Microcephaly more commonMicrocephaly more common

Superficially socialSuperficially social

AutismAutism

Restricted in emotional Restricted in emotional expressionexpression

Macrocephaly more commonMacrocephaly more common

Difficult or impossible to Difficult or impossible to relate to others in a relate to others in a meaningful way meaningful way

Major Differences Between FASD and Autism Major Differences Between FASD and Autism

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Major Differences Between FASD and Autism Major Differences Between FASD and Autism

FASDFASD

• Difficulty in verbal Difficulty in verbal receptive language; receptive language; expressive language is more expressive language is more intact as the person agesintact as the person ages

• Repetitive body movements Repetitive body movements not seen; may have fine and not seen; may have fine and gross motor coordination gross motor coordination and/or balance problems and/or balance problems

AutismAutism

• Difficulty in both expressive Difficulty in both expressive and receptive language and receptive language

• Repetitive body movements Repetitive body movements e.g., hand flapping, and/or e.g., hand flapping, and/or abnormal posture e.g., toe abnormal posture e.g., toe walking walking

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Possible Misdiagnoses and/or Co-occurring Possible Misdiagnoses and/or Co-occurring Disorders for Individuals with FASD Disorders for Individuals with FASD

ADHD ADHD Oppositional Defiant Disorder Oppositional Defiant Disorder Depression Depression BipolarBipolar

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Comparing FASD, ADHD, & ODD Comparing FASD, ADHD, & ODD

FASDFASD ADHDADHD ODD ODD

Behavior Behavior

Underlying cause Underlying cause for the behavior for the behavior

May or may not May or may not take in the take in the information information

Cannot recall the Cannot recall the information when information when neededneeded

Cannot remember Cannot remember what to do what to do

Takes in the Takes in the information information

Can recall the Can recall the information when information when needed needed

Gets distracted Gets distracted

Takes in the Takes in the information information

Can recall the Can recall the information when information when needed needed

Chooses not to do Chooses not to do what they are told what they are told

Intervention for Intervention for the behavior the behavior

Provide one Provide one direction at a timedirection at a time

Limit stimuli and Limit stimuli and provide cues provide cues

Provide positive Provide positive sense of control, sense of control, limits, and limits, and consequencesconsequences

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Comparing FASD, Adolescent Depression and Comparing FASD, Adolescent Depression and Adolescent Bipolar Disorder Adolescent Bipolar Disorder

FASD FASD Adolescent Adolescent Depression Depression

Adolescent Bipolar Adolescent Bipolar Disorder Disorder

Acting out, antisocial Acting out, antisocial behavior behavior



Misreading social cues; Misreading social cues; difficulty difficulty communicating thoughts communicating thoughts and feelings and feelings

Depression Depression Mania or hypomania Mania or hypomania

Provide a mentor to Provide a mentor to model positive model positive behaviors; utilize a lot of behaviors; utilize a lot of role playing role playing

Psychotherapy to Psychotherapy to address issues; protect address issues; protect from harm; medication from harm; medication (antidepressants) with (antidepressants) with careful monitoring careful monitoring

Psychotherapy to address Psychotherapy to address issues; protect from issues; protect from harm; medication (mood harm; medication (mood stabilizer) stabilizer)

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Managing Co-existing Disorders Managing Co-existing Disorders

ADHDADHD Mood DisordersMood Disorders Oppositional Defiant DisorderOppositional Defiant Disorder The role of medicationsThe role of medications

• Start low, go slowStart low, go slow• Monitor closelyMonitor closely• May have opposite effectMay have opposite effect

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Reconceptualizing the Behavior of the Reconceptualizing the Behavior of the Individual with FASIndividual 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

Won’t Can’t Lazy Tries hard Lies Fills in Doesn’t try Exhausted or can’t start Doesn’t care Can’t show feelings Refuses to sit still Over stimulated Fussy, demanding Oversensitive Resisting Doesn’t “get it”

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You Can Make A Difference !You Can Make A Difference ! Think:Think: “Stretched Toddler”.“Stretched Toddler”.

RememberRemember:: “Individuals with FASD “Individuals with FASD will always need an will always need an external brain.” external brain.”

AcknowledgeAcknowledge:: Interventions must be Interventions must be useful to, and usable by useful to, and usable by the individual in order to the individual in order to be an intervention. be an intervention.

FosterFoster:: Inter-dependence. Inter-dependence.

ReflectReflect:: Respect. Respect.

PromotePromote:: Self-worth. Self-worth.4949

SupportSupport:: Self-esteem.Self-esteem.

UnderstandUnderstand:: That FASD is not “Chicken Pox.” That FASD is not “Chicken Pox.” You can’t catch it and it never goes You can’t catch it and it never goes away.away.

ShiftShift:: From a “non-compliance” From a “non-compliance” model to a “non-model to a “non-competence” model.competence” model.

AcceptAccept: : Individuals with FASD do the Individuals with FASD do the best they can with what they’ve best they can with what they’ve got at that time.got at that time.

BelieveBelieve:: You can make a difference.You can make a difference.

You Can Make A Difference !You Can Make A Difference !

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Best PracticeBest PracticeOne prevention model contains seven basic components, form One prevention model contains seven basic components, form the acronym the acronym SCREAMS:SCREAMS:

SStructuretructure: a regular routine with simple rules and concrete, one step : a regular routine with simple rules and concrete, one step instruction, paired with examplesinstruction, paired with examples

CCues: ues: verbal, visual, or symbolic reminders can counter the memory deficitsverbal, visual, or symbolic reminders can counter the memory deficits

RRole modelsole models: family, friends, TV shows, movies that show healthy behavior : family, friends, TV shows, movies that show healthy behavior and life stylesand life styles

EEnvironment: nvironment: minimized chaos, low sensory stimulation, modified to meet minimized chaos, low sensory stimulation, modified to meet individual needs.individual needs.

AAttitude: ttitude: understanding that behavior problems are primarily due to brain understanding that behavior problems are primarily due to brain dysfunctiondysfunction

MMedications: edications: most often the right combination of meds can increase control most often the right combination of meds can increase control over behaviorover behavior

SSupervision: upervision: 24/7 monitoring may be needed for life due to poor judgment, 24/7 monitoring may be needed for life due to poor judgment, impulse control.impulse control.

Teresa Kellerman, Director of the FAS Community Resource Center, Tucson ArizonaTeresa Kellerman, Director of the FAS Community Resource Center, Tucson Arizona

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New Jersey Regional Diagnostic CentersNew Jersey Regional Diagnostic Centers

Six Regional Diagnostic Six Regional Diagnostic treatment and educational treatment and educational centers were established in centers were established in New Jersey in 2002. New Jersey in 2002.

IdentifyIdentify ScreenScreen DiagnoseDiagnose Case Management ReferralCase Management Referral Education OutreachEducation Outreach Beintheknownj.org Beintheknownj.org

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Comprehensive Assessment and Management of Comprehensive Assessment and Management of Individuals with FAS/FASDIndividuals with FAS/FASD

Team approach:Team approach:

Multi-disciplinary assessmentMulti-disciplinary assessment Psychosocial historyPsychosocial history PhysicianPhysician Disciplines (Mental health, speech, OT/PT, LD)Disciplines (Mental health, speech, OT/PT, LD) Parents/caregiversParents/caregivers Social service agencies (DDD, SS, Child protective, drug treatment Social service agencies (DDD, SS, Child protective, drug treatment

centers)centers)

Case managementCase management DiagnosisDiagnosis Early intervention and trackingEarly intervention and tracking Stable home environmentStable home environment MedicationMedication Case manager/mentor in school/home/communitiesCase manager/mentor in school/home/communities Support services-family community, educational, vocationalSupport services-family community, educational, vocational Supervised housing/residential facilitySupervised housing/residential facility Special education and vocational rehabilitation Special education and vocational rehabilitation 5353

POLICY STATEMENTSPOLICY STATEMENTS

Since 1966, AMA and APA have recognized Since 1966, AMA and APA have recognized alcoholism as diseasealcoholism as disease

AMA, AAP, ACOG, CDC, NIAAA, March of AMA, AAP, ACOG, CDC, NIAAA, March of Dimes, and NOFAS all have policies regarding Dimes, and NOFAS all have policies regarding drinking during pregnancydrinking during pregnancy

AMA urges physicians to be alert to possible alcohol AMA urges physicians to be alert to possible alcohol related problems in women and to screen all patients related problems in women and to screen all patients for possible alcohol abuse and dependence.for possible alcohol abuse and dependence.

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Be good to me... Stay alcohol free!

A few drinks canLast forever

No safe time. No safe amount. No safe alcohol. Period….

NIAAA/NOFAS 5656

Astley, S., Aylward, E., Carmichael-Olson, H., et. al. (2009). Magnetic resonance imaging outcomes from a 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. comprehensive magnetic resonance study of children with Fetal Alcohol Spectrum Disorders. Alcoholism: Alcoholism: Clinical and Experimental researchClinical and Experimental research, , 33 33 (10): 1671-1689.(10): 1671-1689.

Hellemans, KS, Silwowska, JH, Verma, P., and Weinburg, J. (2010). Prenatal alcohol exposure : fetal programming 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. and later life vulnerability to stress, depression, and anxiety disorders. Neuroscience Biobehavior Review, Neuroscience Biobehavior Review, 3434, , (6),791-807 (6),791-807

Larkby, CA, Goldschmidt, L, Hanusa, BH and Day, N. (2011). Prenatal alcohol exposure is associated with conduct 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. disorder in adolescence: Findings from a birth cohort. Journal of the Academy of Child & Adolescent Journal of the Academy of Child & Adolescent Psychiatry, Psychiatry, 5050(3),March: 262-271.(3),March: 262-271.

Li, L Coles, CD., Lynch, ME, et al.,(2009). Voxelwise and skeleton-based region of interest analysis of fetal alcohol 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. syndrome and fetal alcohol spectrum disorders in young adults. Human Brain Mapping, Human Brain Mapping, PMID: 19278010.PMID: 19278010.

Mattson, S, and Riley, E. (2011). The quest for a neurodevelopmental profile of heavy prenatal alcohol exposure. Mattson, S, and Riley, E. (2011). The quest for a neurodevelopmental profile of heavy prenatal alcohol exposure. Research & Health, Research & Health, 34 34 (1), 51-56.(1), 51-56.

Wetherill, L and Foroud, T (2011). Understanding the effects of prenatal alcohol exposure using three dimensional Wetherill, L and Foroud, T (2011). Understanding the effects of prenatal alcohol exposure using three dimensional Facial Imaging. Facial Imaging. Alcohol Research & HealthAlcohol Research & Health, , 3434 (1),38-42. (1),38-42.

Feldman, HS, Jones, KL, Lindsay,S, Slyman,D., Klonoff-Cohen H, Kao,K., Rao, Chambers,C. (2012). Patterns of 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 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)study. Already on-line. To be published: Am J Med Part A 155: 2949-2955 (April)

WHO Factsheet #349 (2011).WHO Factsheet #349 (2011).

References References

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American Academy of Pediatrics, New Jersey Chapter: American Academy of Pediatrics, New Jersey Chapter: http://www.aapnj.org/http://www.aapnj.org/

National Organization on Fetal Alcohol Syndrome: National Organization on Fetal Alcohol Syndrome: http://www.nofas.org/http://www.nofas.org/

Fetal Alcohol Spectrum Disorder Center of Excellence: Fetal Alcohol Spectrum Disorder Center of Excellence: http://www.fasdcenter.samhsa.gov/http://www.fasdcenter.samhsa.gov/

Centers for Disease Control –National Center on Birth Defects and DDs: Centers for Disease Control –National Center on Birth Defects and DDs: http://www.cdc.gov/ncbddd/features/birthdefects-dd-keyfindings.htmlhttp://www.cdc.gov/ncbddd/features/birthdefects-dd-keyfindings.html

Fetal Alcohol Disorders Society: Fetal Alcohol Disorders Society: http://www.faslink.org/http://www.faslink.org/

Fetal Alcohol Syndrome Consultation, Education and Training Services, Inc.: Fetal Alcohol Syndrome Consultation, Education and Training Services, Inc.: http://www.fascets.org/http://www.fascets.org/

Be In The Know NJ: Be In The Know NJ: http://beintheknownj.org/http://beintheknownj.org/

Article: “Researchers quantify the damage of alcohol by timing and exposure during Article: “Researchers quantify the damage of alcohol by timing and exposure during pregnancy” pregnancy” http://www.eurekalert.org/pub_releases/2012-01/ace-rqt010812.phphttp://www.eurekalert.org/pub_releases/2012-01/ace-rqt010812.php

WebsitesWebsites

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Alcohol Research and Health, Volume 34(1), 2011-FASDAlcohol Research and Health, Volume 34(1), 2011-FASD

Journal of Psychiatry and Law, Volume 38(4), Winter 20120 (one of 2 volumes on Journal of Psychiatry and Law, Volume 38(4), Winter 20120 (one of 2 volumes on FASD) FASD)

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Full Journals Full Journals

BooksBooks

Prenatal alcohol use and FASD: Diagnosis, assessment and new directions in research Prenatal alcohol use and FASD: Diagnosis, assessment and new directions in research and multimodal treatment- Bentham Science E book edited by Adubato and Cohen- and multimodal treatment- Bentham Science E book edited by Adubato and Cohen- September, 2011September, 2011

Fetal Alcohol Spectrum Disorder: Management and Policy Perspectives of FASD (sic) – Fetal Alcohol Spectrum Disorder: Management and Policy Perspectives of FASD (sic) – edited by Riley, et.al., 2011 Wiley-Blackwell Publishersedited by Riley, et.al., 2011 Wiley-Blackwell Publishers

Prevalence of Fetal Alcohol Spectrum Disorders (sic) FASD: Who is Responsible? –Prevalence of Fetal Alcohol Spectrum Disorders (sic) FASD: Who is Responsible? –edited by Clarrin, et.al., 2011; Wiley-Blackwell Publishers edited by Clarrin, et.al., 2011; Wiley-Blackwell Publishers

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Contact Information:

Speakers- Susan Adubato, PhD - [email protected] Aloisio, MD, FAAP - [email protected]

MD Champions- Alla Gordina, MD, FAAP- [email protected] Mehta, MD, MPH, FAAP- [email protected]

Thank you!Thank you!

An evaluation will be sent to all participants on An evaluation will be sent to all participants on Wednesday, March 21, 2012. Please fill out Wednesday, March 21, 2012. Please fill out the entire evaluation for CME/CNE credits.the entire evaluation for CME/CNE credits.

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assessment & management of fasd speakers: susan adubato, ph.d. denise aloisio, md, faap md...

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