fasd powerpoint presentation
TRANSCRIPT
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Fetal Alcohol Spectrum Disorders In Birth, Foster, & Adopted Traumatized Children: Recognizing the
Symptoms; Effective Interventions
Lois A. Pessolano Ehrmann PhD, LPC, NCCRegistered ATTACh Therapist/Certified Attachment Focused Family Therapist/Consultant
EMDR (EMDRIA) Certified Clinician & Approved ConsultantFounder and Executive Director of The Individual and Family CHOICES Program in State College, PA
Owner: E-Counseling and Consultation ServicesCo-Owner: Wise Heart Leadership Initiative
Most Important Credential……A Mom
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Spider Web Walking…
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Learning Objectives
By the end of this training participants will:
• Have an increased awareness about the prevalence of Fetal Alcohol Spectrum Disorders in the domestic and international populations of adopted/fostered children based upon available research and formalized studies.
• Have increased knowledge regarding the negative consequences of prenatal alcohol and drug exposure on the psychological, physical, emotional, cognitive, interpersonal, and neurological systems of children exposed to substances in utero regardless of birth or adopted status.
• Gained important knowledge regarding the direct effects of alcohol on developing brain structures based on PET/fMRI and SPECT studies and how these effects translate into cognitive, emotional and behavioral symptoms post birth.
• Possess detailed information regarding available resources for parents and professionals working with this population.
• Have integrated knowledge concerning the misdiagnosis of children with FASDs which results in mismatched treatment interventions that may actually worsen the outcomes for these children.
• Have learned 3-5 strategies or interventions which are helpful to the populations of adopted/fostered and birth children who also have FASDs.
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Overview of Presentation• Introductory Remarks
– Definitions and concepts
• Current Models of FASDs.– Incidences of FASDs in US and foreign children whether foster/adopted or birth
status
• Signs and Symptoms– Visible versus invisible– Attachment versus FASD versus Complex Trauma– FASD versus true ADHD versus PTSD versus LDs versus Sleep Problems
• Some Helpful Strategies, Tools & Resources to Share with Parents
• Some guidance from the research– Medication issues– Empirically Supported Strategies– Five empirically validated model programs– Common basic ingredients– Parental Involvement
• What we see working in State College, PA at CHOICES
• Online Resources
• Questions and Answers/ Filling out evaluation forms
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We May Not get Through All of This
No Worries
I’ll send you the entire Power Point with All the Notes Pages
too if you email me at
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What is FASD?“Fetal Alcohol Spectrum Disorder refers to a
constellation of physical and mental birth defects that may develop in individuals whose birth mothers consumed alcohol during pregnancy.” (Duquette et al., 2006)
“Ethanol freely crosses the placenta, thus directly affecting developing fetal cells and tissues.” (Niccols, 2007)
Alcohol as are other drugs as well is a teratogen.
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History• First reference to adverse effects of alcohol on the fetus: “Beware and drink no wine or
strong drink…for lo, you shall conceive and bear a son.” (Judges 13:4, 5)
First scientific study Sullivan 1899; increased rate of still-birth • and infant death in children of alcoholic women
• 1940s: Haggard and Jellinek concluded that the developmental abnormalities of children born to alcoholic mothers were secondary to the environment in which they were raised.
• 1950’s and 1960’s: French studies
• 1970s: Streissguth and Colleagues ; Fetal Alcohol Syndrome was coined.
• 1980s-the new millennium in 2014 there have been hundreds of investigations identifying the risks and consequences of consuming alcohol during pregnancy and these reports have been supplemented by animal experimental study as well. Streissguth (1997) in her book Fetal Alcohol Syndrome reports on her most comprehensive well known study.
• 1990s- present: With the surge in the use of newer Brain imaging technologies
–Direct observation of actual brain structures and functioning–Studies investigating molecular or biomarkers
• Some studies on how to assist persons who have been exposed.
For a brief history of the issue of FASDs see Jones and Streissguth (2010).
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Current Model and Conceptions of Fetal Alcohol Spectrum Disorders
From animal studies (Rodents)
Post-mortem evaluations
New technologies in fMRIs, SPECT scans and other neuro-imaging procedures.
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FASDs
38 % of all individuals who have a FASD have the physical craniofacial features which means that 62% do not!
The 62% = The Invisible Disability
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Facial Anomalies
From Wattendorf et al., (2005)
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Examples of Variability
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The Faces of Persons who have Fetal Alcohol Syndrome: The 38 %
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People who have FASD: The 62%
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Diagnosis of Disorders that Fall Under the Umbrella of FASDs
• Fetal Alcohol Syndrome (American Academy of Pediatrics, 2000)
– Confirmed maternal alcohol consumption– Growth deficiency– Specific patterns of anomalies – Central nervous system abnormalities
• FAS Diagnostic and Prevention Network (2004) supports the 4 digit Diagnostic code of all FASDs introduced by Astley and Clarren (1997):
1. Growth impairment2. The FAS facial phenotype3. Evidence of brain damage4. Prenatal alcohol exposure
This system uses a team approach and evaluates the four areas. The team rates these four areas a four point Likert scale (1,2,3,4). A full diagnosis of FAS requires 3s and 4s in all four categories. Other diagnosis (ARND; FAE, pFAS etc.) have scores that vary that are greater than 1.
Other genetic disorders that have similar symptoms need to be ruled out. (Manning & Hoyme, 2007)
Diagnosis of Disorders that Fall Under the Umbrella of FASDs Continued
Diagnosing in Cutting Edge Ways
– Eye movement deficits (Green et al., 2009) (Paolozza et al., 2013)
– Functional MRIs, SPECT Scans, PET Scans
– 3 D facial laser scans to an automated logarithm
– Biomarkers (Caprara et al., 2007) (Memo et al., 2013)
• Screening for metabolites of Ethanol• Fatty Acid Ethel Esters (FAEEs) in Meconium of newborn
infants (more recent alcohol exposure)• Ethel Glucoronide & Ethel Sulfate in hair of birth mothers
(history of up to six months)• Neonatal hair –begins in 3rd /4th month gestation and stays
around until about 3 months post birth
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Diagnosis of Disorders that Fall Under the Umbrella of FASDs Continued
Behavioral Phenotyping (Caprara et al., 2007; Quattlebaum & O’Connor, 2013):
• CBCL • Vineland Adaptive Behavior Scales
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Prevalence of FASD in the US PopulationStatistics on FASD in USFor full blown FAS:CDC 0.2-1.5/1000 birthsOther Studies suggest:0.5-2.0 per 1000 births
For all FASD:Researches believe all FASDs are 4Xs the prevalence of FAS.10 per 1000 births or 1% of the US populationUDHHS (2007): 40,000 newborns a year meet the criteria for a FASD.
High Risk US Populations:Native Alaska 3.0-5.6 per 1000 birthsNative American 9-10 per 1000 births
Sources: NIAAA: May & Gossage retrieved 2008 (Rechecked 2014)
Center for Disease Rates of Drinking for Women of Child-Bearing age
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Prevalence of Prenatal Drug Exposure
• Chasnoff (1989): 11% of all newborns, approximately 459,690 are exposed prenatally each year.
• Gomby & Shiono (1991): 739,000 women use illicit drugs during pregnancy every year.
• Schipper (1991): A substance exposed infant is born more frequently than once ever 90 seconds.
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FASD and Prenatal Drug Exposure Incidences in US Foster/Adopted Children
Not much is known.
Wedding et al., (2007): psychologist did not have accurate understanding about FASDs, danger of alcohol use in pregnancy.
Peadon et al., (2008): Very few places do accurate diagnosis of FASDs and most are located in North America.
What is known follows:
Foster Children study in Washington State.Astley, Stachowiak, Clarren, & Clausen (2002)FAS 10-15 times higher than in the general population
May et al., (1983), Streissguth et al., (1985) estimated that 73 to 80 % of all children in US foster care or placed for adoption have full blown FAS.
Ehrmann (2006) found that 28% of adopted children out of the US foster care system were exposed to alcohol prenatally and 47% were exposed to some illicit drug prenatally.
FASDs in Children in Care in Other Countries
Country Rate: per 1000
USA 10-15
Canada 113
Chile 62-158
Russia: Orphanages and Foster Homes 150
Russia: Special Needs Orphanages 427-680
Brazil 277
(Popova et al., 2014)
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Adopted Children from Foreign Countries
Eastern Europe15 per 1000 births Extrapolated to approximately21,000 children born with FASD each yearSource: Orphan Doctor @ www.orphandoctor.com
Miller it al., 2006Phenotypic Survey of Children residing in Russian Orphanages revealed that 45% of the children had intermediate and 15% had high phenotypic expression scores suggesting prenatal exposure To alcohol.
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Risk Factors• Dose of alcohol (May et al., 2013)
• Pattern of exposure (May et al., 2011)
– Binge versus chronic
• Developmental timing of exposure (Lawrence et al., 2008; Perkins et al., 2013)
• Genetic variation (Reynolds et al., 2011)
• Maternal characteristics (May, 2011)
• Synergistic reactions with other drugs (Elgrin, Bruaroy & Laegreid, 2007)
• Interaction with nutritional variables (Fuglestad et al., 2013)
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Dosage Effect
Dosage Effect on Subsequent Births
1st Child 2nd Child 3rd Child 4th Child
Severity
Often unaffected
1 minor disorder or defect
FAS
FAS with Multiple Comorbidities
Source: Larry Burd, PhDNorth Dakota Fetal Alcohol Syndrome Center501 N. Columbia RoadGrand Forks, ND 58203
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Dosage ExampleFirst Second Third Fourth Fifth
•No FASD even thoughmaternal consumption happened
•Lots of allergies.
•Became a drug addict now in recovery.
•LearningDisabilities •Depression.
•Self medicated with alcohol
•Seizure disorder•alcohol & drug problems currently in recovery
•Full blown FAS (diagnosed as Minimal Brain Damage in 1st grade)
PhD Professor and Clinician
Certified Plummer and JW Minister
It took two attempts but is now a Registered Nurse (and my hero!)
Computer Technician
Roads Crew for the StateBecame a Union Rep and eventually a Supervisor
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Developmental Timing of Exposure
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The Rest of The StoryStreissguth and Colleagues
Primary Disabilities:
• Lower IQ
• Impaired ability in reading, spelling, and arithmetic
• Lower level of adaptive functioning; more significantly impaired than IQ
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Typical Disabilities• Typical Disabilities:
– Sensory Integration Issues (Franklin, Deitz, Jirikowic & Astley, (2008)
• Researchers found high correlation between sensory integration and processing measures and the Achenbach CBCL
– In general Children with FASDs
Are overly sensitive to sensory input:
• Upset by bright lights or loud noises• Annoyed by tags in shirts or seams in socks• Bothered by certain textures of food• Have problems sensing where their body is in space (i.e., clumsy)
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Typical Disabilities Continued• Memory Problems (Wheeler et al., 2012; Pei et al., 2011)
– Working memory – Multiplication– Time sequencing
• Information Processing Problems
– 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– Say they understand when they do not– Have verbal expressive skills that often exceed their level of understanding– Misinterpret others’ words, actions, or body movements– Have trouble following multiple directions
See Greenbaum et al. (2009) for nice summary on cognitive issues.
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Typical Disabilities Continued• Executive Function Problems (Cole, 2011; Pei et al., 2011; Rasmussen & Bisanz, 2009)
– Go with strangers– Repeatedly break the rules– Do not learn from mistakes or natural consequences– Frequently do not respond to point, level, or sticker systems– Have trouble with time and money– Give in to peer pressure– Cannot entertain themselves– Trouble shifting from task to task– Attention issues
• Self-Esteem and Personal Issues
– Function unevenly in school, work, and development– Experience multiple losses– Are seen as lazy, uncooperative, and unmotivated– Have hygiene problems– Do not accurately pick up social cues
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Typical Disabilities ContinuedHearing, speech and language
• Due to craniofacial abnormalities of FAS
– Cleft palate– Otitis media with effusion and conductive hearing loss– Voice dysfunction, articulation disorders– Speech and language delays– Language abilities seem lower than would be
expected given child IQ
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Typical Disabilities Continued• Social Development Issues (Greenbaum et al., 2009; Hellemans et al.,
2010; Kully-Martens et al.,2012)
– Atypical attachment behavior and impairment in state regulation
– Outgoing, socially engaging, affectionate and excessively friendly
– Preschoolers tend not to appear to differentiate familiar from unfamiliar
– Studies citing parental and teacher reports indicate arrested social development rather than delayed social development
– Deficits in Theory of Mind (TOM)
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Secondary Disabilities
• Mental health issues
• Disrupted school experience
• Trouble with the law– They lie (Rasmussen, Talwar, Loomes, & Andrew, 2008)
• Inappropriate sexual behavior
• Confinement in jail or treatment facilities
• Alcohol and drug problems
• Dependent living
• Employment problems
See Hellemans et al. (2009) for a nice review of FASDs and later life vulnerabilities, stress, depression and anxiety disorders.
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Percentage of Persons with FAS or FAE that had Secondary Disabilities
= Age 6+ = Age 12+ = Age 21+
Most Recent Research Findings• Saccadic eye movements are altered and control is
impaired (Paolozza et al., 2013; Paolozza et al., 2014)
• Visual system deficits in adolescents (Coffman et al., 2013)
• Functional handwriting performance is altered (Duval-White et al., 2013)
• Order identification in impaired (Bower et al., 2013)
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Most Recent Research Findings Continued
• Costs of FASDs in various countries (Popova et al., 2014)
• System level barriers that unintentionally reinforce the secondary conditions of FASDs (Petrenko et al., 2013)
• Binge alcohol in the first four weeks of pregnancy prior to knowing one is pregnant was correlated with high behavioral symptom scores in 5.5 year old children (Alvik, Aalen & Lindemann, 2013)
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Sleep Problems• The overwhelming needs of individuals with FASDs has possibly resulted
in overlooking the significant sleep issues of this population.
• Pineal melatonin production/secretion may be abnormal
• Signs of a sleep problem:– Daytime hyperactive behaviors– Attention deficits– Night terrors– Waking more than twice in a night– Dissociation between sleep/wake behaviors and the environment– Sleep walking– Day time fatigue– Delayed sleep onset– Early morning awakenings– Circadian rhythm sleep dysregulationPlease see Jan et al. (2010) and Ipsiroglu et al. (2013) for excellent information and
recommendations for this issue.
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What do Individuals with FASDs do Well?
Music and rhythm Creativity
DanceWhat else?
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Mindfulness Moment
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www.g2conline.org/2022
FASDs and the BRAIN
For an excellent summary on structural and functional brain abnormalities in Fetal Alcohol Spectrum Disorders see
Nunez, Roussotte & Sowell (2011)
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Alcohol Affects the Brain
Source: Teaching Students with Fetal Alcohol Spectrum DisordersFlorida State University Center for Prevention and Early
Intervention Policy (2005)
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Brain Structure and Function StudiesDamage depends on the state of embryological
development
• Conception to first weeks of prenatal development:– cytotoxic or mutagenic
• 4-10 weeks after conception– Excessive cell death in the CNS and abnormal nerve cell
migration– Disorganization of tissue structure and microcephaly
• 8-10 weeks and on– Disorganization and or delay in cell migration and development
• Third TrimesterDamage to the cerebellum, hippocampus, and prefrontal cortex
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Continuum of Brain Dysfunction
Continuum of Brain Dysfunction from Prenatal Alcohol Exposure
Prenatal EthanolExposure
Decreased NeuronProduction
Small Brain
MigrationAbnormalities
StructuralBrain Abnormalities
Neurotransmission
Abnormal Neurotransmitter
PathwayActivity Electrical
DysfunctionSensory
Impairments
Learning ImpairmentsModularity
Cognitive-Behavioral Dysfunction
Abnormal Apoptosis(Pruning)
CNSDysfunction
Loss of IQ
Developmental DelaysLearning DisabilitiesMental Retardation
Impairments in:- Memory- Attention- Adaptive Behavior- Use of Social Rules- Sleep- Behavior Regulation
Source: Larry Burd, PhDNorth Dakota Fetal Alcohol Syndrome Center501 N. Columbia RoadGrand Forks, ND 58203
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Before Birth• Low growth rate due to suppression of
growth hormone in hypothalamus• Increases HPA activity and disrupts
hormonal interactions between maternal and fetal systems affecting the development of fetal metabolic, physiologic and endocrine functions
• Disrupts synaptogenesis causing neurons to commit suicide (die by apoptosis) on a massive scale
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Disrupted Synaptogenesis
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Early Development
• HPA disruptions result in high basal and post stress cortisol levels
• Hyper-responsiveness to stress and immune system vulnerabilities
• High levels of irritability and feeding and sleeping problems• As preschoolers: “short, skinny children with butterfly like
movements who are hyperactive and/or excessively friendly and fearless” (Streissguth & Giunta, 1988).
• Developmental delays, language issues and poor motor coordination are also noted during this period of development
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Hippocampus• Plays a major role in:
– Short term memory– Spatial navigation
• In a MRI study Rijkonen, Salonen, Partanen, & Verho (1999) found that children with FAS have smaller left hippocampus volume then right and this is associated with memory deficits.
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Hypothalamus• The Hypothalamus does the following
– Hormone regulation and metabolic processes– Linking of nervous system to the endocrine system via the
pituitary gland– Controls hunger, thirst, body temperature, fatigue, anger,
circadian cycles and sexual drive and is part of fight/flight/freeze
• Suppression of growth hormone controlled by Hypothalamus happens in children with FASD.
• Dysregulation
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Basal Ganglia in the Human Brain
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Basal Ganglia• A group of nuclei/interconnected in healthy individuals’ brains
with the cerebral cortex, thalamus and brain stem.• Responsible for:
– Motor control– Cognition– Emotions– Learning
• MRI studies show disproportionate reductions in basal ganglia volume in children with FAS and FAE especially in the caudate nucleus which is involved in higher cognitive functions and connected neuronally to the frontal lobes where executive functioning resides (Archibald et al., 2001).
• PET studies reveal reduced metabolic activity in the caudate nucleus in high functioning adolescents and adults with FAS (Clark et al., 2000).
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Corpus Callosum• What does it do?
– Connects the left and right hemispheres of the brain – Consists of 200- 250 million contralateral axonal projections– Inter-hemispheric communication
• Abnormalities in individuals with FAS including agenesis and thinning in the anterior and posterior regions.
• Displacement of the isthmus and splenium related to deficits in verbal learning.
• Refer to Roebuck-Spencer, Mattson, Marion et al., 2004 on some current findings related to the corpus callosum and bimanual coordination
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Corpus Callosum in the Human Brain
A. Magnetic resonance imaging showing the side view of a 14-year-old control subject with a normal corpus callosum; B. 12-year-old with FAS and a thin corpus callosum; C. 14-year-old with FAS and agenesis (absence due to abnormal development) of the corpus callosum.
Source: Mattson, S.N.; Jernigan, T.L.; and Riley, E.P. 1994. MRI and prenatal alcohol exposure: Images provide insight into FAS. Alcohol Health & Research World 18(1):49–52.
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Alcohol Effects of Corpus Callosum
These two images are of the brain of a 9-year-old girl with FAS. She has agenesis of the corpus callosum, and the large dark area in the back of her brain above the cerebellum is essentially empty space.Source: Mattson, S.N.; Jernigan, T.L.; and Riley, E.P. 1994. MRI and prenatal alcohol exposure: Images provide insight into FAS. Alcohol Health & Research World 18(1):49–52.
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Cerebellum• Responsible for:
• Integration of neural pathways between cerebellum and cerebral motor cortex
– Motor skills– Balance, coordination– Learning in terms of attention and language and music processing– Sensory perception/ proprioceptive feedback
• For individuals with FASDs:
– Reductions in cerebellar volume specifically in the anterior vermis.– Reductions are linked to dyslexia– Jacobson et al., (2008)
• Eye blink conditioning is a cerebellular-mediated Pavlovian conditioning paradigm that involves contingent temporal pairing of conditioned stimulus (tone) with an unconditioned stimulus (brief air puff to the eye that elicits a reflexive blink). Children with FASD are impaired in this response indicating that the cerebellum and brain stem areas are highly affected by alcohol prenatally. This procedure could help in diagnosis and treatment intervention.
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Frontal Lobeswww.g2conline.org/2022
For a good resource on executive functioning is Rasmussen & Bisanz (2009)
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Other Anomalies• EEG readings (Kaneko et al., 1996)
– Atypical in approximately 50% of the children and adolescents with FASD
– Reductions in the power of the left H alpha frequencies suggesting less mature brain activity.
– Prolonged latency in P300 spikes in parietal
cortex suggesting deficits in information processing.
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Other Anomalies Continuedwww.g2conline.org/2022
• Too much grey matter
• Not enough white matter; white matter integrity (connective routes) are compromised
• Similar metabolic activity in both hemispheres when it is supposed to be different
• Too much blood in the right frontal region which is characteristic of children with executive function problems
• Fagerlund, Heikkinen, Autti-Ramo et al., 2006– “First evidence for in vivo brain metabolic alterations in a group of
adolescents and young adults with FASD. Lower NAA/Cho and NAA/Cr in several anatomical locations from cerebral and cerebellar areas compared with controls. Alterations were seen in frontal and parietal cortices, frontal white matter, corpus callosum, thalamus and cerebellar dentate nucleus. These findings suggest that long standing or permanent biochemical alterations can occur in response to prenatal exposure to alcohol.” p. 2100
Recent Findings about Brains and FASDs• Molecular targets of Alcohol in the brain (Rodent Models)
(Kane, Drew & Phelan, 2013)– Kills existing brain cells and stops the birth of new ones– Messes with migration so cells don’t go where they are supposed to or
they go there later than they are supposed to– Cells don’t attach the way they are supposed to– Reduces release of growth hormone– Insulin signaling system is disrupted – Depletes micronutrients; causes iron deficiency– White matter rich regions seem to be targeted by ethanol – Affects inflammation and the immune response as it impacts glial cells– Epigenetics effect- changes in chromatin structures
• Alcohol binds to Potassium ions in brain causing impairment in cell growth (Bates, 2013)
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Recent Findings about Brains and FASDs Continued
• Grey matter volume is reduced (Nardelli et al., 2011)
• Alcohol impacts gene expression (Perkins et al., 2013)
• Neuropsychological deficits are not exacerbated by ADHD (Glass et al., 2013)
• Sluggish Cognitive Tempo construct defined by behavioral symptoms including hypoactivity, daydreaming, increased internalizing behaviors (Graham et al., 2013)
• Abnormal hippocampus volume found in youth with ARND (Dudek et al., 2014)
• Affective related executive functioning impaired in children and adolescents with FASDs (Kully-Martens et al., 2013)
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Another Pause to Stay in the Here and Now
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What will Help?
–Lots of studies on characteristics and brain differences
–Not a great deal of rigorous study on effectiveness or efficacy.
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Premji et al., 2006Only three intervention studies out of ten had the rigor
needed required to support efficacy.
“Conclusion: There is limited scientific evidence upon which to draw recommendations regarding efficacious interventions for children and youth with a Fetal Alcohol Spectrum Disorder. Clinicians, researchers, service providers, educators, policy makers, affected children and youth and their families and others need to urgently collaborate to develop a comprehensive research agenda for this population.”
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Common Co-occurring/Misdiagnoses of
FASD • ADD• ADHD• ODD• RAD• LD• Speech and language delay• PDD• Developmental Receptive Language Disorder• Sensory Integration Dysfunction• Conduct Disorder, Seriously Emotionally Disturbed• Borderline Personality Disorder• Antisocial Personality Disorder• Autism, Aspergers • Sleep Disorders
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MisdiagnosisFASD Versus ADHD
– Coles et al., as cited in Lockhart (2001)
• Two groups of adolescents (FASD vs. ADHD) • FASD group had intact scores in auditory processing but impaired
scores in visual processing adding to the growing evidence that attention problems of individuals with FASDs differ than those who have ADHD without prenatal alcohol exposure.
– Mattson et al., (2006)
• Children with FASDs have pervasive deficits in visual focused attention and deficits in maintaining auditory attention over time but no deficits in the ability to disengage and reengage attention when required to shift attention between visual and auditory stimuli although reaction times to shift were slower.
FASDs Versus ADHDGreenbaum et al., (2009)
•Three groups of children: FASD vs. ADHD vs Normally Developing Controls (NC)
•Children taken off drugs for day of testing
•CBCL-parent and teacher versions; Social Skills Rating Scale (SSRS); various social cognition tests; Minnesota Test of Affective Processing
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Greenbaum et al., (2009) continued
Children with FASDs Children diagnosed with ADHDTeachers – higher internalizing problems Parents –higher internalizing problems
Teachers- higher externalizing problems
Parents –higher externalizing problems Parents – higher externalizing problems
Teachers –higher behavior problems
Parents –less social skills Parents less social skills
Teacher- less social skills Teacher – less social skills
Children scored lower on social cognition
Children scored lower on emotional processing tasks
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FASDs Versus ADHDFor a great summary of the differences review Coles (2011):
•70 % of alcohol affected children presenting for treatment receive a diagnosis of ADHD
•Stimulants are widely prescribed for children with FASDs but the few medication studies done have reported that these are not helpful for FASDs
•There is symptom cross over but the source is very different
•Methods allowing a more critical examination of behavioral and cognitive characteristics can discriminate FASD from ADHD
•Children with FASDs show: – deficits in encoding of information– Difficulty shifting attention whereas ADHD kids struggle with focus and sustained
attention– Impaired eye blink reflex response
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Misdiagnosis • FASD versus ODD• FASD Versus RAD• FASD Versus Autism Spectrum Disorder
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Protective Factors• Stable home• Early diagnosis • No violence against oneself• More than 2.8 years in each living situation• Recognized disabilities• Diagnosis of FAS • Good quality home from ages 8 to 12• Basic needs met for at least 3/4th of the person’s life
The Importance of Accurate Diagnosis“The clarification of these diagnostic issues is important for all those
who care for children, especially pediatricians whose role is to recognize, early, those children who may be at risk from prenatal exposure to alcohol and foster and adoptive parents who must
advocate for the child to ensure access to early intervention programs. Without a diagnosis of alcohol-related risk, many children will not be deemed eligible for early intervention and school-based treatment programs, nor will insurance companies pay for related
health care interventions. Parents and caregivers thus find themselves in a position of advocating for children not deemed “sick
enough” to receive services.” page 29 Chasnoff (2010)
Issue of life long accommodation versus remediation
Brain remediation and independence versus “external brain”
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What do Parents Need?•Education that helps parents distinguish between I won’t and I can’t in their children. Parents have to “think younger”
•SELF Led Parenting: helping parents to discover their own triggers and then resolving them.
•Respite in either direction
•Support groups.
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Helping a Child with FASD
• Graefe (2003):– The 4 S’s + C
Structure, Supervision, Simplicity, Steps
+
Context
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Strategies for Children with FASDWorking Memory Issues
Yellow Stickies.
What did Ben do well today? Take a picture of the sand tray.
Bilateral Stimulation to keep something in memory.
IEP at school to accommodate this as a brain based issue due to permanent impairment from fetal alcohol exposure.
External memory reminders
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Example: External Memory RemindersStep Activity Picture
CueCheck off when done
1 Rise and shine when Daddy V. wakes you up with a hug!!
2 Go to the bathroom, wash your face and hands and brush your teeth ….thank you very much!!!
3 Put on your clothes, socks, and sneakers left out the night before…
4 Make your bed
5 Put PJs in the hamper
6 Get back pack and come to kitchen for good eats made by Mommy J. who loves you soooo much!!
7 Hand over this checklist for points!!!
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Chore Check List ExampleStep 1. Take Endust, spray it on a rag and wipe off all tables, shelves, items on tables and shelves and picture frames.2. Put the old newspapers in a plastic bag and place in the recyclable container.3. Take paper towels and Windex and clean all the windows.
4. Use the sweeper to vacuum the entire rug.
5. Use the broom and the dust pan to sweep all the dust, dirt and and dog hair off the steps. 6. Put all cleaning supplies, brooms and vacuum away.
7. Recheck to make sure that you have done everything on this list in the best way possible.8. Once all the items are checked in hand this in for points!!
Reminder Sequences on Walls
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1 2 3 4 5
6 7 8 9
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Strategies for Helping Children with FASD
Problems with Cause and Effect
Let natural consequences happen as long as they are not dangerous or deadly.
Writing for Greater Self Knowledge Exercise Sheets
Choices Have Consequences EMDR protocol
Writing for Greater Self- KnowledgeIf you put forth sincere effort in writing your responses to these questions and become willing and open to discussing these questions with us and possibly other members of your team (i.e. counselor, psychiatrist etc.) then we will consider reducing your grounding to ___ days. If you do not put in sincere effort on this writing task or approach it with a negative or disrespectful attitude then your grounding is ___ days. Your choice. Write your responses to the following focusing on the following event or behaviors that were unacceptable: ____________________________________________________________________________________ What exactly happened? What actions or behaviors did I do? What thoughts did I have when I did the behavior or action? What feelings did I have as I was doing the behavior? How did my actions hurt myself? How did my actions hurt others? What could I have done differently? Other questions to be answered are on the back.
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More Strategies• Behavioral offenses
– ALWAYS have the child make amends in a concrete physical way.– Teach for habituation rather then understanding
• Time management– Describe time in TV episodes
• Affect Regulation– Resource development with bilateral stimulation– Deep breathing and body signal awareness– Mindfulness techniques– Drumming – Self calming or self soothing strategies– Find a nook or cranny for the child to “tuck in”.
• For motor coordination and self-esteem– Feather exercise
Some Strategies for Adults with FASDs
For some great ideas about treating and working with adults with FASDs read
Burd et al. (2011).•Slow the pace•Meet and educate in settings with decreased stimulation•Have resources made at the appropriate reading level (6th grade or younger)•Repeat the concepts•Be aware of memory issues and provide materials for the individual to write down dates, details etc.
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Mindfulness Can be Fun!
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Guidance from the Research- Early Identification
Lockhart (2001):
• Identification• Teasing out I won’t versus I can’t• Multilevel approach
Green et al. (2009)
• Cambridge Neuropsychological test Automated Battery• children with FASDs regardless of craniofacial dysmorphology
Peterson et al. (2007)
• fatty acid ethyl esters (FAEE) in newborn infants’ first bowel movements
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Research Guidance Continued- Medication Issues
• Frankel, Paley, Marquardt & O’Connor (2006)– Type of medication affected outcome– Prescribed neuroleptic medications (risperdone, olanzapine) showed better
outcomes than stimulant medication (amphetamine salts, methylphenidate, dextroamphentamine).
• Doig, McLennan & Gibbard (2008)
– FASD & ADHD in children
– more difficulties with inattention than other ADHD related symptoms.– ADHD medication less able to normalize the inattention symptom– Are the ADHD symptoms manifested in this group of children a function of
alcohol exposure versus other factors that lead to ADHD?
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Research Guidance Continued- Empirically Supported Strategies
• Roebuck-Spencer & Mattson (2004)
– CVLT-C Versus VL-WRMAL
– CVLT-C=Implicit Learning Strategy
– The strategy is “Semantic Clustering”
– When children with a FASD had IQ> 80 and they used Semantic Clustering, their retention scores were the same as children in the healthy control group.
– The researchers suggest that for children who have FASDs “that to ensure optimal learning, it is important to provide opportunities for semantic clustering (or other relevant leaning strategies) and provide enough trials so that children have an opportunity to rehearse newly learned information after having reached their learning plateau.” p 1430
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Empirically Supported Strategies Continued
Kalberg & Buckley (2007)• Structuring the environment in the
school, home and community settings• Cognitive Control Therapy
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Research Guidance Continued-Interventions for Children with FASDs
Bertrand (2009)
• Centers for Disease Control and Prevention (CDC) provided federal grant money.
• Five innovative research projects exploring interventions for children with FASDs
• Improve the developmental outcomes of individuals with FASD, reduce secondary conditions and improve the lives of families affected by FASDs.
• Three common components in the intervention trials: – 1. had to target a specific area of deficit or risk among the targeted population; – 2. provide children in both treatment and control groups with multidisciplinary
assessments that guided referrals for standard care; – 3. incorporate specific instruction and training for parents and caregivers regarding
basic information about FASDs, advocacy skills and caregiver support.
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Study 1-Project Bruin BuddiesBertrand, 2009 continued
Study 1: Project Bruin Buddies: A social skills training program to improve peer friendships for children with FASDs (University of California at Los Angeles)
– Parent-assisted Children’s Friendship Training (CFT)
– Parents facilitated children’s social skills practice & got education, support and training.
– Adapted for the neurocognitive deficits common to children with FASDs
– Skills: • 1. social network formation • 2. informational interchange • 3. entry into a group • 4. in-home play dates; • 5. conflict avoidance and negotiation.
– Didactic instruction, modeling, rehearsal, performance feedback, rehearsal at home; homework assignments; and coaching
– Results:• Social skills increased • behavioral problems decreased• positive outcomes continued to be robust at the three month post test measure • Parent knowledge and parent satisfaction increased.
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Child Friendship TrainingO’Connor, Frankel, Paley et al., (2006)
Description of Child and Parent Treatment SessionsSession Child Group Topic Parent Group Topic
1 Rules of the group; elements of good communication
Goals and methods of treatment; limitations of intervention: what not to expect
2 Having a conversation Having a conversation
3 Joining a group of children already at play: “slipping in”
Supporting child friendships
4 Joining a group of children already at play: “slipping in”
Joining a group of children already at play: “slipping in”
5 How to be a good sport Joining a group of children already at play: “slipping in”
6 How to be a good sport Appropriate games for play dates
7 Rules of being a good host Play dates
8 How to handle teasing How to handle teasing
9 Unjustified accusations How to handle adult complaints about child’s behavior
10 How to be a good winner How to be a good winner
11 Bullies and conflict situations Bullies and conflict situations
12 Graduation Graduation
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Child Friendship Training ContinuedSchonfeld, Paley, Frankel and O’Connor (2009)
• Behavioral regulation effectiveness of CFT
• Impulse control + problem solving flexibility + emotional monitoring improved social skills and reduced problem behaviors following CFT.
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Study 2: The Math Interactive Learning Experience (MILE)
Bertrand, 2009 continuedStudy 2: Georgia-Sociocognitive habilitation using math
interactive learning experience (MILE) program (Marcus Institute)– Mathematical functioning– Developed and adapted learning strategies– Intensive short term individual instruction
– Results:• positive long term consequences on academic achievement and
educational attainment
• beneficial in cognitive rehabilitation programs
• improved global measure of behavior the training and support groups they conducted with the caregivers
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Study 3: Neurocognitive Habilitation Bertrand, 2009 continued
Study 3: Neurocognitive habilitation for children with FASDs (Children’s Research Triangle)
– Program of neurocognitive habilitation for children who had been in foster care or who had been adopted
– Supported Streissguth et al., and others findings of protective factors
– Education and support to enhance the families’ capabilities
– Executive functioning skills, self-regulation skills, memory skills, cause and effect reasoning, sequencing, planning and problem solving.
– Alert Program (Williams & Shellenberger, 1996)• speed identification skills• strategies to change gear and speed• sensory motor monitoring skills• regulation of state of arousal.
– Results:• improved significantly in executive functioning skills and overall regulation
ability• exhibited increased ability to tell more robust and healthy stories
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Study 4: Parent-Child Interaction TherapyBertrand, 2009 ContinuedStudy 4: Parent-Child Interaction Therapy: Application of an evidence-based treatment to reduce behavior problems among children with FASDs
(University of Oklahoma Health Sciences Center)– Evaluate two group based interventions for children with FASDs
that would reduce behavior problems and decrease parental stress.
– Parent-Child Interaction Therapy (PCIT) versus Parent Only Parenting Support & Management (PSM).
– Both PCIT and PSM resulted in positive improvements
– Some Caveats
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Study 5: Families Moving ForwardBertrand, 2009 Continued
Study 5: Families Moving Forward (FMF): A behavioral consultation intervention to improve outcomes for families raising children with FASDs (University of Washington)
– Improve caregiver self efficacy, meet family needs and reduce child problem behaviors.
– Parenting attitudes; parenting responses
– Skills of “parent-friendly” positive behavior support approaches:• antecedent-based behavior strategies• advocacy skills • “accommodations” • I can’t versus I won’t
– FMF is a low cost feasible intervention
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The Common Basic Ingredients
1. Parent education, training and support2. Explicit instruction of the children.3. Individualized and targeted interventions
that can be implemented within current community services.
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Research Guidance: Parental Involvement• Paley et al., 2006
– Study on the effects of raising a child with FASDs on the parent
– Parents get stressed out because:• Problems of the child• Ineffective interventions• Anxiety about the well being and eventual independence
of the child• Adoptive parents felt more stressed than biological
parents
• Parents also feel more stressed when they have not had resolution in their own trauma experiences
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What Seems to be Working at CHOICES!!
Neurofeedback
Attachment Focused Family Therapy
EMDR and or other bilateral stimulation techniques
Parts Work/ IFS for the Children, parents and families
Art and Narrative Processes
Family Empowerment NetworkAbstractThe Family Empowerment Network is a support, training, referral, and advocacy program serving families affected by Fetal Alcohol Spectrum Disorders and the providers who work with them. FEN's mission reads TO EMPOWER FAMILIES THROUGH EDUCATION AND SUPPORT.
Three main goals outline our work activities:•To increase awareness of the effects of alcohol use on pregnancy, and provide education to families, service providers, and the general public on fetal alcohol spectrum disorders (FASD)•To offer support and advocacy to families•To facilitate opportunities for screening and diagnosis of FASD
FEN Activities include:•Toll-free "800" information line•Educational opportunities for Families and Professionals•Parent Support•Resource Materials•The FEN Pen newsletter
http://www.fammed.wisc.edu/innovation-outreach/fen
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Families Affected by Fetal Alcohol Spectrum Disorders (F.A.F.A.S.D.)
Mission Statement and Action Plan:Our mission: to raise awareness about Fetal Alcohol Spectrum Disorder (FASD) through education, support and research-based training to caregivers raising children with FASD.We will do this through: •targeted awareness campaigns that focus on the experience of caring for and being a person with FASD;•trainings and presentations about best practices for FASD care based on a neuro-behavioral model, for parents, professionals, and the general public; and•providing scholarships and stipends for parents wishing to access trainings and workshops; and•creating retreats and conferences and family camps for people caring for people with FASD; and•breaking down the barriers that have prevented the #1 cause of intellectual disability and developmental delay in North America from becoming widely understood by parents and caregivers, doctors, therapists, mental health professionals, teachers, and the general public.
http://fafasd.org
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FASCETSFetal Alcohol Syndrome Consultation, Education and Training Services, Inc.
• Diane Malbin is the Executive Director• Providing An Alternative Paradigm for Understanding Behaviors• FASCETS is a private, non-profit 501(c)3 organization established October
1997 • Services available through FASCETS are designed to increase
understanding, build on strengths, expand options for developing effective parenting and professional techniques, enhance existing programs and support the development of new programs. Short term goals include increased effectiveness, reduced frustration, and attainment of improved outcomes, including burnout prevention in professionals. The long term goal of this work is to contribute to the prevention of FASD.
• FASCETS supports the development of a family-centered, community-based, multidisciplinary continuum of care. This collaborative design has been found to be effective in enhancing communication among parents and professionals for their mutual benefit.
http://www.fascets.org/who.html104
Great Resource for EducatorsSanford School of Medicine Center for Disabilities
Topics included in the Fetal Alcohol Spectrum Disorders HandbookFetal Alcohol Spectrum Disorders Frequently Asked Questions (FASD FAQs)
Historical Overview of Fetal Alcohol Spectrum DisordersIncidence and Prevalence of Fetal Alcohol Spectrum Disorders
Characteristics of Fetal Alcohol Spectrum DisordersCurrent Diagnostic Criteria for Fetal Alcohol Spectrum Disorders
Primary Disabilities in Fetal Alcohol Spectrum DisordersExecutive Skills
Secondary Disabilities in Fetal Alcohol Spectrum DisordersPreventionResources
http://www.usd.edu/medical-school/center-for-disabilities/fetal-alcohol-spectrum-disorders-handbook.cfm
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Education StrategiesTeaching Math
The following strategies are appropriate for Preschool, Elementary and Secondarystudents. Level specific samples will be noted in the text. Math may be a difficult subject for students with a Fetal Alcohol Spectrum Disorder. Memorized counting from one to ten does not mean that the student understands what each number means.
Teach the student what the number “one” means before any more numbers are taught to the student. > Preschool or younger Elementary example - Ask the student to hand you onecrayon or draw one circle. Cut the numbers out of paper, glue oatmeal, rice, glitter, etc. to the number. The child can then see, hear and feel the number. This technique is appropriate forPreschool and younger Elementary students.
Touch and count objects to reinforce learning in Preschool and Elementarystudents. Teach functional math. For example - money, time, addition and subtraction.Teach strategies for problem solving versus the memorization of facts.
Preschool and younger Elementary students may benefit from using the student’sfingers or counting tools to assist with addition or subtraction. > Using finger or counting tools should not be the first choice. However, they should not be ruled out if they can benefit the student’s ability to learn math.
Older Elementary and Secondary students may benefit from the use of a calculator. Multiplication, memorizing the multiplication tables and division may be difficult forstudents with a Fetal Alcohol Spectrum Disorder. > A calculator may be necessary for the student to do multiplication and division.
41
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Online ResourcesSAMHSA FASD Center for Excellence
fasdcenter.samhsa.gov
Centers for Disease Control and Prevention FAS Prevention Team: www.cdc.gov/ncbddd/fas
National Institute on Alcohol Abuse and Alcoholism (NIAAA): www.niaaa.nih.gov/
National Organization on Fetal Alcohol Syndrome (NOFAS): www.nofas.org
National Clearinghouse for Alcohol and Drug Information: ncadi.samhsa.gov
Diagnostic Guide for Fetal Alcohol Spectrum Disorders: The 4-Digit Diagnostic Code: Third Edition (2004)
http://depts.washington.edu/fasdpn
Online Resources
Children’s Research Triangle: Ira Chasnoff’s facility in Chicago, Ilhttp://www.childstudy.org/
Ntiupstream: Book and instructional materialswww.NTIUPSTREAM.COM
Women’s Health http://womenshealth.gov/illnesses-disabilities/types-illnesses-
disabilities/fetal-alcohol-spectrum-disorders.html
American Academy of Pediatricshttp://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/fetal-alcohol-spectrum-disorders-toolkit/Pages/
default.aspx
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The FAS Bookstore
http://www.come-over.to/FAS/store/
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