Evidence-Based Interventions for Children with FASD

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Interventions for Children with FASD

Molly N. Millians, D.EdDepartment of Psychiatry and Behavioral Sciences, Emory University

Formed Families Forward Webinar16 January 2020

Who we are...The Center for Maternal Substance Abuse and Child Development

Developmental and Intervention

Research

Prevention Clinical

Center for Maternal Substance Abuse and Child Development, Department of Psychiatry and Behavioral

Sciences, Emory University School of Medicine

Since 1980, under the direction of Claire D. Coles, Ph.D., the focus of MASCD has been to better understand and improve the lives of those affected by prenatal exposures.

Aims of the Webinar

1. To provide an overview of some of the research based interventions found effective for children with FASD.

2. To discuss the elements of effective interventions for children with FASD.

Results from animal and human studies converge on evidence of the harmful effects from prenatal alcohol exposure

2012 Statements from American Bar Association and American Academy of Pediatrics

2013, DSM-5, Appendix NDPAE

Brief History of FASD Research and Clinical Services

Fetal Alcohol Spectrum Disorders

Fetal Alcohol Syndrome (FAS) ICD-10 Code: Q86.0

Partial Fetal Alcohol Syndrome (pFAS)

ICD-10 Code: Q86.0

Neurodevelopmental Disorder, Prenatal Alcohol Exposure

(ND-PAE) ICD-10 Code: F88

DSM-V Code: 315.8

Umbrella term, not a clinical diagnosis

Clinical and Diagnostic Terms Used in the United States

www.aap.org/fasdClinical diagnoses

Fetal Alcohol Syndrome (FAS)

Partial Fetal Alcohol Syndrome (pFAS)

Alcohol Related Neurodevelopmental Deficit (ARND)

Neurodevelopmental Disorder Associate with Prenatal Alcohol Exposure (ND-PAE)

FAS Criteria: 1) Confirmed Alcohol Exposure*, 2) Facial Features, 3) Growth Deficits, and 4) Cognitive and Behavior Impairments.

pFAS Criteria: 1) Confirmed Alcohol Exposure, 2) Cognitive and Behavioral Impairments, and 3) Either Facial Features or growth deficits.

ARND Criteria: 1) Confirmed Alcohol Exposure, and 2) Cognitive Impairment.

ND-PAE Criteria: 1) Confirmed Alcohol Exposure, 2) Impairments in Cognition, Behavior and Adaptive Functioning

Full spectrum

NeurobehavioralBertrand, 2004; Kable et al., 2015; Coles et al., 2016, Kable & Coles, 2018

Diagnosing the Effects from Prenatal Alcohol Exposure ENEC Clinic

*A diagnosis of FAS may be givenwithout confirmed alcohol exposure ifdysmorphia, growth deficits, andneurobehavioral impairments arepresent. The deficits cannot beattributed to any other developmentdisability or medical condition.

Evaluations \conducted by an interdisciplinary team with a trained medical doctor, psychologists, and other specialists

FASD: Overlooked or misdiagnosis? May et al., 2018 “Prevalence of Fetal Alcohol Spectrum Disorders in 4 US Communities”, JAMA, Vol. 319 (5)

● Conservative prevalence estimation, 11.3 to 50.0 per 1,000

Chasnoff et al. 2015 “Misdiagnosis and Missed Diagnosis in FASD”, Pediatrics, Vol. 135 (2)

● Out of 156 children, 125 had never been diagnosed as affected by prenatal alcohol exposure, a missed diagnosis rate of 80.1%

● 31 who had been recognized before referral as affected by prenatal alcohol exposure, 10 children’s FASD diagnoses were changed within the spectrum, representing a misdiagnosis rate of 6.4%

● 21 (13.5%) children’s diagnoses stayed the same

Within this clinical sample, 86.5% of youth with FASD had never been previously diagnosed or had been misdiagnosed

Without appropriate diagnosis and interventions, individuals with FASD are at high risk for● School problems or school failure ● Underemployment or unemployment ● Mental health problems● Social problems ● Involvement with juvenile justice or criminal justice

*This is in addition to risks associated with childhood adversity (Mukherjee, Cook, Norgate, & Price, 2019)

Factors leading to better outcomes for individuals with FASD● Early diagnosis and access to interventions ● Developmentally appropriate interventions

across life-span ● Stable caregiving environment and supportive

network of adults and later peers

Neurobehavioral Deficits and FASD

Caring for Children with FASD

Children with FASD may have problems in one or more the following areas that require interventions

Medical/Health Development/Cognition

Social/Emotional/Behavior

Academic/Vocational

CardiologyNeurology

Feeding Issues

Developmental Assessments

OT/SLP Habilitation Services

Parent EducationBehavior Management

Psychiatry Social Skills

Special Education Modified Programs

Vocational Rehabilitation

Medical/Health/ Motor Problem Area Treatment Need

Growth Delays Most are benign. Some require supplemental or enteral feedings. In some cases, may require working with an endocrinologist.

Hearing Vulnerability to ear infections- cranial facial malformation and immune system alterations. In some cases, hearing loss. ENT and audiology care may be required.

Vision Acuity problems; Strabismus (problems aligning eyes); Amblyopia (lazy eye). Increased need for vision exams; ophthalmology care. In some cases, surgical interventions.

Dental Cranial facial abnormalities may lead to dental crowding requiring orthodontial care.

Cardiac Benign heart murmurs. In some, serious cardiac malformations mayoccur and require cardiology.

Motor Delays in gross and fine motor development. May require occupational therapy, physical therapy, and/or orthopedic care.

Parent Education Programs about FASD

Development of a Mobile Application for Families of Children with FASD

Adaptation of the Families Moving Forward (FMF) Program

Behavioral Regulation/Self-Regulation

Behavior and Self-Regulation Continued

Social Skills and Adaptive Functioning Authors Program/Skill Sample Treatment Result

O’Connor et al., 2006 Social Skills 100 children in US6-12 years of age

Bruin Buddies (aka. Best Buddies) social skills training (www.bbucla.comi)

Parent report - improved social skills/reduced problem behaviors

Keli et al., 2010 Social Skills 100 children in US6-12 years of age

Bruin Buddies social skills training program

Less hostile attributes in social situations

O’Connor et al, 2012 Social Skills 85 children in US6-12 years of age

Children’s Friendship Training

Improved prosocial behavior. Parent report-improved social skills

Coles, Strickland, Padgett, & Belmoff

Fire and street safety 32 children in US4-10 years of age

Virtual reality game Immediate knowledge of street crossing safety and fire safety

O’Connor et al, 2016 Reduce alcohol consumption in teens with FASD

54 teens in USMean age 15 years

6-60 minute clinical sessions and caregiving training

Teens in treatment group more likely to refrain from alcohol use

MILE and GOFAR Programs

Investigators: Julie Kable, Ph.D; Claire Coles, Ph.D., & Elles Taddeo, Ed.DFAS Clinic at the Marcus Center and the Maternal Substance Abuse and Child Development Program, Department of Psychiatry

MILE was funded by

Behavioral Regulation Training Incorporates typical behavioral management training principles into the context of dealing with the neurodevelopmental damage associated with prenatal alcohol exposure that interferes with learning and compliance

GoFARPurpose of Program:

● Developed intervention to address the affective and cognitive control deficits exhibited by children with neurodevelopmental deficits associated with prenatal alcohol exposure

● Conducted through the use of a serious computer game alongside parent and child therapeutic sessions

Kable, Taddeo, & Strickland, 2015

Metacognitive Technique of FAR

Focus and Plan

Act Reflect

Focus and Plan

Act Reflect

Entire session or “macrolevel”

Task level or “microlevel”

GoFAR Sample

GoFAR Intervention

GoFAR Results: Parent Training ● Improvement in children’s regulation of attention in relation to therapist’s

achievement of therapy goals across sessions.

● A trend was identified between therapists’ ratings of parents’ achievement of therapy goals and reduction of children’s destructive behavior.

● A significant treatment group effect was found on change in sustained mental effort. Children in the GoFAR group showed greater reduction in problems with sustained mental effort than those FACELAND group.

GoFAR Results: Behavior Regulation Training

GoFAR Results: Changes in Domestic Living Skills

GoFAR Results: Improvements with Attention

Summary of GoFAR● Learning to use FAR either through sessions or on computer resulted in improvements of parent

reported disruptive behavior.

● Children in both GOFAR and FACELAND groups showed reduction in negative affectivity.

● Children in both groups showed improvements in sustained attention.

● Children in both groups showed improvements in domestic living skills.

Math Interactive Learning Experience (MILE)Designed for children affected by prenatal alcohol exposure, ages 3-10 years

Goals of the Study ● Support, educate, and empower caregivers

of children with FASD● Improve learning readiness

(behavioral/arousal regulation)● Improve academic achievement in a known

area of deficit

MILE Procedures and Intervention Procedure

● Children assigned to math intervention or no intervention group

● Pre-test, Post-test to assess results● All caregivers received training on FASD

Math Intervention

● Developed from High Scope ● 6 weeks of 1:1 tutoring with coordinating parent

training ● Homework activities ● FASD presentations to children’s teachers ● Special educator consultations

Curriculum Page

Parent Activity Page

MILE Instructional Approaches

Example of Changes in Number Writing

Number Writing Measure Pre-Test Child: 6 years, 1 month

Number Writing Measure Post-Test Child: 6 years, 1 month

MILE Mathematics Outcomes

Kable, Coles, & Taddeo, 2007; Coles, Kable, & Taddeo, 2009

MILE Mathematics Outcomes

Kable, Coles, Taddeo, 2007; Coles, Kable, Taddeo, 2009; Kable, Coles, Taddeo, & Strickland, 2015

MILE Outcomes: Caregiver Behavioral Ratings

Kable, Coles, & Taddeo, 2007

Caregivers Responses

MILE Outcomes: Parent/Teacher Behavioral Ratings

Canadian MILE Research Carmen Rasmussen’s research group at the University of Alberta

MILE without Parent Component MILE in Small Group

Saturday Cognitive Habilitation Program

Goals: ● To improve academic achievement in either reading or mathematics ● To apply strategies used in MILE to address learning problems in older children

*Program did not include a parent component like MILE

Participants:● 5 children, ages 10 years, 6 months to 13 years, 8 months with prenatal alcohol exposure ● Cognitive and academic functioning were in the Deficient to Low Average range ● Participants received 12-15 weeks of 1:1 interventions for 50 minutes each session

Millians & Coles, 2015

Saturday Cognitive Habilitation Program Interventions

● Metacognitive Training

● Reading ○ Phonological and Strategy Training

(PHAST) (Lovette, Lacerenze, & Bordern, 2000)

○ Guided Reading (Fountas & Pinnell, 2000)

● Mathematics○ Adaption of MILE (Kable, Coles, &

Taddeo, 2000)

Metacognitive Training

● Plan-Do-Review/ Self-questioning○ Plan: Do I know what to do? What looks

familiar? Do I need to ask for moreinformation?

○ Do: How am I doing? Is my strategyworking? Do I need to change mystrategy?

○ Review: How did I do? What do I need toremember for next time?

● Questioning for Cognitive Shifts○ If a child solved a problem correctly, the

instructor stated, “I agree with your answer.How do I know it is correct?”

○ If a child solved a problem incorrectly, theinstructor identified the error and asked,“Why do I think it is incorrect?”

Hohmann, Weikart, 1995; Crowley, Shrager, & Siegler, 1997

Saturday Cognitive Habilitation Program Pre-Post Test Results

Millians & Coles, 2015

Building Academic Skills in Children with FASD

Key Features to Improve Learning

● Appropriate environment● Simplified learning environment● Reduce chances of failure or making wrong choices,

“errorless learning” (rule of thumb, 80% success rate of learning opportunities)

● Monitor arousal and teach in “calm alert states”

Millians & Coles, 2015

Collaborative Care for Children with FASD

Elements of Effective Interventions for Children with FASD

There is no one intervention method or approach to meet the needs of children affected by prenatal alcohol exposure.

Elements of Effective Interventions

● Based upon each child’s developmental, cognitive, and/or learning profile ● Developmentally appropriate ● Presented on the each child’s learning level● Focus on the habilitation of skills - including coping and self-advocacy ● Embed the intervention to address the deficit within context for application ● Collaboration between home, providers, and school

Elements of Effective Interventions for Children with FASD

● Some interventions may be derived from other disciplines or found effective for children with other developmental disabilities

Conclusion● Children with FASD are at high risk for lifelong

challenges.

● In some cases, the risks are compounded byenvironmental factors including multiple fosterplacements, limited access to supports, andgenetic and medical influences.

● Early intervention is important. But, manyindividuals with FASD may require lifelonginterventions.

● Intervention planning needs to consider theindividuals needs.

● With appropriate interventions, individuals withFASD can succeed.

References

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