By: Kourtney J. Gorham at The University of Regina for EPSY 821 – Aptitude and Achievement Analysis (Instructor Rori Lee)
Best Practices: Fetal Alcohol Spectrum Disorder (FASD)
Introduction: FASD Definition, Symptoms, and Prevalence
According to the FASD Network of Saskatchewan (2017) and the Canadian FASD Research Network (2019), Fetal Alcohol Spectrum Disorder (FASD) is a lifelong disability caused by prenatal alcohol exposure (PAE) that can impact an individual’s behavioral, cognitive, physical, and sensory domains. FASD has both neurocognitive and neurobehavioral implications, as PAE damages the Central Nervous System (CNS) in the developing fetus (Brown, Connor, Adler, and Langton, 2012; Nash & Davies, 2017; Popova, Lange, Burd, & Rehm, 2015). While specific impairments may not be realized until later in life when environmental demands increase, challenges with fine and gross motor skills, daily living skills, physical and mental health, learning, memory, executive functioning, receptive communication, social skills, and self-regulation may occur (Brown et al., 2012; CanFASD, 2019; FASD Network, 2017; Kully-Martens et al., 2018). However, each individual will experience different strengths and challenges and thus, requires individualized supports to target their unique areas of need.
FASD often goes undiagnosed due to stigma, lack of awareness, and the fact that it is an invisible disability as many individuals have no physical markings (FASD Network, 2017; Nash & Davies, 2017). Furthermore, FASD may be misdiagnosed as it commonly co-occurs with Attention Deficit Hyperactive Disorder (ADHD) – 40-90% of cases (Glass et al., 2017), Autism Spectrum Disorder (ASD), Bipolar Disorder (BD), Major Depressive Disorder (MDD), Intellectual Developmental Disorder (IDD), Oppositional Defiance Disorder (ODD), Reactive Attachment Disorder (RAD), Specific Learning Disability (SLD) – 17-35% of cases (Glass et al., 2017), and other sensory and trauma-related concerns (FASD Network, 2017; Nash & Davies, 2017). This is problematic because appropriate supports may not be in place without appropriate diagnosis.
FASD impacts individuals from all socioeconomic classes and ethnic groups and is especially apparent in cultures where alcohol is culturally accepted. The FASD Support Network (2017) notes that, “in Saskatchewan, it is believed that 1 in 100 people may be affected by FASD” (p. 4). CanFASD (2019) reports that “4% or 1.4 million people in Canada have FASD” (n.p.). These high rates may occur because approximately half of all pregnancies are unplanned (Nash & Davies, 2017) and there is no known safe amount or time to consume alcohol when pregnant (CanFASD, 2019; FASD Network, 2017; Osterman, 2011; Zizzo & Racine, 2017), including during the first month when individuals may not be aware of their pregnancy. Statistics show that, on average, 90% of women abstain from drinking alcohol during pregnancy (Kully-Martins et al., 2018; Nash & Davies, 2017; Singal et al., 2017). However, social inequalities, lack of awareness, and previous addictions may contribute to continued use in some cases (Migliorini et al., 2015), making PAE a societal reality.
Overall fetal development is impacted by the quantity and timing of alcohol exposure, maternal metabolism rate, and the overall nutritional status of the mother (Brown et al., 2012; Kalberg & Buckley, 2007). Thus, not all individuals who have been prenatally exposed to alcohol will be diagnosed with FASD and presentations vary among those with the diagnosis (Brown et al., 2012; Kalberg & Buckley, 2007). Individual profiles may differ because neuroanatomical changes in the brain interact with the person’s environment to produce behaviors, particularly social deficits (Kully-Martens, Denys, Treit, Tamana, & Rasmussen, 2012). Within the behavioral domain, dysmaturity, issues interpreting social cues, and low self-esteem may occur (FASD Network, 2017; Kully-Martens et al., 2012). Brown et al. (2012) note that individuals with FASD are susceptible to peer pressure due to impulsivity, executive functioning deficits, and issues making, selecting, and retaining positive friendships. Cognitive impairments may include short attention spans, failure to learn from mistakes, and struggling to sequence behavior to reach a goal (executive functioning) (FASD Network, 2017; Kalberg & Buckley, 2007). Within the physical and sensory domains, poor balance and coordination, sensory processing concerns, and failure to meet height and weight developmental milestones may occur (FASD Network, 2017). These symptoms, and many more, can lead to secondary challenges such as unemployment, addictions, run-ins with the law, underachievement, difficulty learning advanced concepts, and school-drop out (FASD Network, 2017; Popova et al., 2015). In fact, individuals with FASD are 19 times more likely to go to jail (Popova et al., 2015), this being amplified if their needs are unmet, early diagnosis did not occur, and environmental concerns are present (Brown et al., 2012). While there is no cure for FASD, treatment to reduce secondary concerns is crucial.
A multidisciplinary team of specialists is required to make a FASD diagnosis (Birch, Carpenter, March, Mcclung, & Doll, 2016; Cook et al., 2016; FASD Network, 2017). This team may include a specially trained physician, an educational and/or clinical psychologist or social worker, a speech language pathologist, an occupational therapist, a psychiatrist, and/or a pediatrician (FASD Network, 2017). Furthermore, once a diagnosis is made, treatment planning may include referrals to other specialized service providers. Brown et al. (2012) recommend a minimum of three professionals including a neuropsychologist to do the comprehensive testing, a medical doctor to conduct a physical examination, and a psychologist to administer psychological assessments, observe the child in multiple environments if possible, and interview and integrate information from all applicable sources, such as caregivers and birth records (Coons-Harding, Flannigan, Burns, Rajani, & Symens, 2019; Kalberg & Buckley, 2007; Sattler, 2014).
A FASD diagnosis requires three significant deficits at least 1 standard deviation (SD) below the mean in at least three neurocognitive domains and/or global IQ deficits (Brown, Connor, & Adler, 2012). Typically impairments must be below the third percentile (Coons-Harding et al., 2019). In addition to this, facial features, growth delays, and CNS functional, structural, and neurological damage may be apparent (Brown et al., 2012; Walker, Edwards, & Herrington, 2016). The FASD Network (2017) describes three diagnoses on the FASD spectrum: FASD with sentinel facial findings, FASD without sentinel facial findings, and at risk for neurodevelopmental disorder and FASD. To diagnosis FASD with sentinel facial findings there must be three facial features and three domains of impairment but PAE does not need to be confirmed (FASD Network, 2017). The facial features include “a thin upper lip, short palpebral fissure (the opening between eye lids), and smooth/flattened philtrum (the groove between the nose and lip)” (FASD Network, 2017, p. 6). In the second type, three domains of impairment remain but facial features are not required. In the absence of facial features, PAE must be confirmed (FASD Network, 2017). The at risk designation involves three facial features or PAE confirmed and a clinical concern about development (FASD Network, 2017).
Unfortunately, there are many barriers to receiving a diagnosis such as long waitlists, lack of service providers for all age groups, social inequalities such as transportation or rural access difficulties, lack of education and understanding, and persisting stigmatization of mothers (Chamberlain, Reid, Warner, Shelton, & Dawe, 2016; FASD Network, 2017). In Saskatchewan we currently do not have a specially trained physician to identify short palpebral fissures, making FASD with sentinel facial findings hard to diagnose (FASD Network, 2017). For children, diagnosis and assessment services can be acquired through Child and Youth Services centers in Prince Albert, Saskatoon, and Regina. Adults can be referred to Child and Youth Services in Regina, Dr. Gerald Block in northern and central Saskatchewan, or the Saskatoon Genetics/Teratology Clinic at the Royal University Hospital in Saskatoon (Government of Saskatchewan, 2019). Supports, with or without diagnosis, can be obtained from the FASD Support Network of Saskatchewan and Raising Hope/Regina Street Worker’s Advocacy Program. Furthermore, caregivers and educators can consult the Best Practices for Serving Individuals with Complex Needs: Guide and Evaluation Toolkit (2018) by the Alberta Clinical and Community-Based Evaluation and Research Team and the FASD Prevention Framework (2014) from the Saskatchewan Prevention Institute.
FASD Diagnostic Tools
A variety of tools are used to asses FASD: the FASD Behavioral Mapping Tool to assess dysmaturity (FASD Network, 2017); the Fetal Alcohol Behavioral Scale that screens for 36 behaviors under the communication, emotional, social skills, academic, motor skills, and functional domains (Brown et al., 2012); and the FASD 4-Digit Diagnostic Code to assess the key diagnostic features (Walker et al., 2016). In addition, a battery of psychological tests and observations are used to look at domain-specific impairments in one or more of the following areas: motor skills, cognition, language, academic achievement, memory (verbal, auditory, and spatial), attention, executive functioning, affect recognition, and adaptive behavior (social skills and communication) (Brown et al., 2012; Kalberg & Buckley, 2007). Kalberg and Buckley (2007) note that an individual’s overall IQ score matters less than their ability to function within their environment, making a complete battery of assessments and observations essential.
Domain-specific assessments vary but should follow the Canadian FASD Research Network’s 2015 guidelines, with direct measures being preferred (CanFASD, 2019; Coons-Harding et al., 2019). Coons-Harding et al. (2019) surveyed 23 FASD clinics in Alberta to determine the comprehensive battery of neuropsychological tests that were being used. In some instances, assessments that were not recommended in the 2015 guidelines and older test editions were used. However, the following list includes the best practice measures that were used under each domain, with the first assessment in the list being used more frequently than the last (Coons-Harding et al., 2019, p. 45-9):
- Motor Skills Domain: Bruininks-Oseretsky Test of Motor Proficiency – 2nd Edition; Beery-Buktenica Developmental Test of Visual-Motor Integration – 6th Edition; Grooved Pegboard/Purdue Pegboard Test; Finger Tapping/Oscillation Test; Hand Dynamometer/Hand Grip Strength Test; Peabody Developmental Motor Scales – 2nd Edition; Miller Function and Participation Scales and Movement Assessment Battery for Children – 2nd Edition for caregiver interviews
- Cognitive Domain: Wechsler Adult Intelligence Scale – 3rd Edition; Wechsler Intelligence Scale for Children – 5th Edition; and Wechsler Preschool and Primary Scale of Intelligence – 4th Edition
- Language Domain: Peabody Picture Vocabulary Test – 4th Edition; Clinical Evaluation of Language Fundamentals – 5th Edition; Test of Narrative Language – 2nd Edition; Expressive Vocabulary Test – 2nd Edition; Preschool Language Scales – 5th Edition; Perceptive-Expressive Emergent Language Test – 3rd Edition; Renfrew Bus Story; and language samples
- Academic Achievement Domain: Wechsler Individual Achievement Test – 3rd Edition; Woodcock Johnson Tests of Achievement – 4th Edition; Wide Range Achievement Test – 4th Edition
- Memory Domain: California Verbal Learning Test – 2nd Edition; Rey Complex Figure Test and Recognition Trial; Wide Range Assessment of Memory and Learning – 2nd Edition; NEPSY-II Subtests; Wechsler Memory Scale Revised – 4th Edition; Children’s Memory Scale
- Attention Domain: Connors – 3rd Edition and Adult ADHD Rating Scales; Behavior Assessment System for Children – 3rd Edition; Connors Continuous Performance Test –3rd Editions; and observations, anecdotal evidence, and reports from educators/caregivers
- Executive Function Domains: Behavior Rating Inventory of Executive Functioning – 2nd Edition; NEPSY-11; Delis-Kaplan Executive Function System; Test of Problem Solving – 2nd Edition (Adolescent) and 3rd Edition (Children); Wechsler Working Memory Scales; Wisconsin Card Sort Task; Behavior Assessment System for Children – 3rd Edition; Rey Complex Figure Test/Rey-Osterreich Complex Figure
- Affect Recognition Domain: Behavior Assessment System for Children – 3rd Edition; Beck Depression Inventory – 2nd Edition; Beck Anxiety Inventory; and previous/current diagnosis
- Adaptive Behavior (Social Skills and Communication) Domain: Adaptive Behavior Assessment System – 3rd Edition; Social Language Development Test; Vineland Adaptive Behavior Scales – 3rd Edition
FASD Best Practice Supports
Supports for FASD generally fall under the best practice realm, as many of the strategies are general or have not been researched enough to be deemed evidence-based. This is further complicated by misdiagnosis, underdiagnoses, comorbid conditions, resource gaps for certain ages, and the variability of FASD presentations (FASD Network, 2017; Griffin & Copeland, 2018; Olson, 2016). The Alberta Clinical and Community-Based Evaluation and Research Team outlined supports with expert consensus, good evidence, moderate evidence, and some evidence in Practices for Serving Individuals with Complex Needs: Guide and Evaluation Toolkit (2018). Strategies with expert consensus included transition-focused supports and future planning, staff education, trauma supports, interpersonal skills, age-appropriate services, consistency and structure, Functional Behavior Assessments (FBA), preventative medical and mental health care, supported recreational activities, managing sexually exploitative situations and risky behaviors, person-centered employment, financial aid and access support, support with the justice system, and individualization. Supports with good evidence included early diagnosis, focusing on caregiver wellbeing, stable home environments, consistency, collaboration, responsiveness, and proactivity. Supporting sensory processing, utilizing unique learning profiles, parent-assisted adaptive functioning training and other educational resources had moderate evidence. Individual support, agency collaboration, strengths-based approaches, and secure and safe housing had some evidence (Pei, Tremblay, Poth, Hassar, & Ricioppo, 2018). Similarly, the FASD Network (2017) recommends general strategies in the areas of memory, confabulation, cause and effect, time management, transitions, ownership, impulse control, social skills, sensory, and sleep. Examples of strategies include repeating instructions in multiple ways, increasing time, and utilizing visuals (memory); probing only if it is a dangerous story and utilizing social stories (confabulation); utilizing positive reinforcement, visual reminders of expectations, and decision mapping (cause and effect); implementing timers, calendars, schedules, and predictable routines (time management); utilizing forewarning, prior practice. and visual schedules (transitions); practicing borrowing items and labelling personal belongings (ownership); implementing role-playing scripts, perspective taking, and supervision as needed (impulse control); modelling behavior, providing mentorship that builds off strengths, and setting developmentally appropriate expectations (social skills); reducing distractions, utilizing adaptive seating, and movement breaks (sensory); and implementing a calming sleep routine that may include doctor recommendations (sleep) (FASD Network, 2017). While the supports are general, they should be selected based on individual needs and strengths.
Specific programs for FASD have been created, however often with limited research or acceptable norm groups. The Children’s Friendship Training (CFT) program was created by the CDC Cooperative Research Group and combines child friendship training with parental education. Children learn how to enter play, interact with peers, and resolve conflicts during 12 weekly 90-minute sessions. Techniques such as role play, homework assignments, and caregiver play coaching are used (Brown et al., 2012). Olson (2016) reported immediate positive “effects on social knowledge and skills, and problem behavior” (p. 1819) and Brown et al. (2012) noted that these positive gains were maintained three months later.
The Math Interactive Learning Experience (MILE) also has been shown to be effective with results lasting after six months (Kable, Taddeo, Strickland, & Coles, 2015; Kully-Martens et al., 2017). It was created by Kable in 2007 and piloted to 61 children ages three to ten in Georgia. In the program, students receive six weeks of one-on-one math instruction that is individualized based on their baseline data and includes interactive and physical exploration of objects, slower instruction, immediate feedback on errors, and metacognition techniques for problem solving through the Plan-Do-Review model or Focus-Act-Reflect (FAR) mnemonic. Parents receive six weeks of training. In Kable et al.’s (2015) self-report study, students had learned twelve new math concepts vs. three in the control group after two months but it was a small sample size and the parental piece may not have had any impact. In a Canadian study with 28 children ages four to ten, those who were older with confirmed PAE but no FASD diagnosis, and lower IQs made greater gains with MILE (Kully-Martens et al., 2018).
Additional programs are available for specific areas of need. Caribbean Quest is a computer program that targets attention and working memory and MacSween et al. (2015) note that the program led to significant improvements with auditory, visual, and working memory. The GoFar program aims to improve self-regulation and adaptive skills through computerized games, parent training, and the FAR mnemonic (Kable, Taddeo, Strickland, & Coles, 2016). The program occurs over ten weeks with phase one focusing on learning the FAR technique and phase two focusing on application of the strategy. It has online and in-person parent training options (Kable et al., 2016). However, the sample size was small and little research about the effectiveness is available. Parents Under Pressure (PuP) focuses on self-regulation and mindfulness through the child-parent relationship (Reid et al., 2017). This program has preliminary support because there was a small sample size and issues with accurately measuring growth. It was built on the foundation “that self-regulation underpins adaptive functioning” (Reid et al., 2017, p. 46). Project Step Up promotes parental education and harm-reduction for youths with FASD using substances. It has satisfactory results for those with IQs over 70 but success may actually be attributed to supportive home environments (O’Connor, Quattlebaum, Castaneda, & Dipple, 2016; Olson, 2016). Step-by-Step is a one-on-one mentorship program for parents affected by FASD. It assists individuals with socioeconomic disadvantages but little research is available (Denys, Rasmussen, & Henneveld, 2011). While there are many available programs, continued research is needed to determine which programs can be considered evidence-based strategies.
While there is no cure for FASD, targeted intervention and remediation of secondary concerns is promising. Medications are sometimes used to target comorbid conditions (Brown et al., 2012; Nash & Davies, 2017) but additional research is needed as stimulant medications have controversial results and may increase heart problems and seizures in this population (Brown et al., 2012) . Pei et al. (2017) note that recommendations made most to least are: “education, medical, anticipatory guidance, accommodations, family support, mental health, developmental therapy, social services/child welfare, community/social/leisure programs, safety, reassessment, and other” (p. 176). However, they found that recommendations may be based on comorbid disorders or availability in the community rather than individualized need. Brown et al. (2012) recommend that no matter what program or strategy is used, the focus should be on replacing maladaptive behaviors. Additional research on strategies and programs for individuals with FASD will help determine evidence-based supports. Providing the subsequent supports and services to all those impacted by FASD is paramount in remediating lifelong secondary concerns and helping individuals be as successful as they can be.
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