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FASD: What types of intervention and rehabilitation are useful?
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Neuroscience and Biobehavioral Reviews 31 (2007) 278–285 www.elsevier.com/locate/neubiorev
Review
FASD: What types of intervention and rehabilitation are useful? Wendy O. Kalberg, David Buckley The University of New Mexico, Center on Alcoholism, Substance Abuse and Addictions, 2650 Yale SE, Albuquerque, NM 87106, USA
Abstract Fetal alcohol spectrum disorders (FASD) occurs worldwide when children are prenatally exposed to alcohol. This paper discusses recent findings regarding the neuropsychological and behavioral effects of prenatal alcohol exposure and how it impacts the developmental and functional abilities of children with FASD. Specifically, recent research focus has concentrated on studies to elucidate a neurobehavioral phenotype for the alcohol-exposed population. As a result, the FASD field has learned what types of neurobehavioral issues occur most frequently with these children. This paper discusses how that information can be used to inform school assessment, intervention planning, and support. Strategies for functional assessment, individualized planning, structured teaching, and developments in cognitive-behavioral methods are described. r 2006 Elsevier Ltd. All rights reserved. Keywords: Fetal alcohol spectrum disorders; Neurobehavioral research; Intervention planning
Contents 1. 2.
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Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Assessment in the development of a learning profile for an affected child . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1. Functional issues related to deficits in executive functioning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2. Diagnosis vs. assessment, making the distinction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3. Functional classroom assessments. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Interventions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1. Structure and systematic teaching as potentially effective methods for children with FASD . . . . . . . . . . . . . . . . . . . 3.2. Visual structure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3. Environmental structure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4. Task structure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5. Cognitive control therapy as a potentially useful intervention process for children with FASD . . . . . . . . . . . . . . . . 3.6. The role of the family . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1. Introduction It is now known that fetal alcohol syndrome (FAS) exists in most areas of the world. A recent study in the Lazio Corresponding author. Tel.: +1 505 925 2306; fax: +1 505 925 2313.
E-mail address: [email protected] (W.O. Kalberg). 0149-7634/$ - see front matter r 2006 Elsevier Ltd. All rights reserved. doi:10.1016/j.neubiorev.2006.06.014
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Region of Italy near Rome found that some children exposed to alcohol have the features of fetal alcohol syndrome or a related fetal alcohol spectrum disorder (FASD) (May et al., 2006). The developmental outcome of children exposed to alcohol prenatally is dependent on a wide range of factors including: the quantity and timing of the alcohol exposure; maternal age; nutritional status of
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the mother; and parents’ intelligence and level of education. Therefore, the effect of prenatal alcohol exposure on a child’s development is highly variable and not all children who have been exposed to substantial amounts of alcohol display all of the features of fetal alcohol syndrome. Researchers have had difficulty determining what prenatal alcohol exposures cause adverse neurobehavioral findings. Some researchers suggest that seven standard drinks per week may be enough to cause neurobehavioral challenges for a child (Jacobson and Jacobson, 1994). There are a complex set of factors to consider when determining the adverse neurobehavioral effects of prenatal alcohol exposure. There are genetic factors, environmental factors (nutrition of the child, general well-being of the child, parenting style, etc.), and maternal health and nutrition factors which all contribute to the child’s capability and developmental aptitude. Because the factors contributing to developmental issues are so complex and the developmental outcomes so variable, those studying FAS have begun to discuss a continuum of affect that occurs with children who have had prenatal alcohol exposure. FASD describes the full spectrum of affects seen in children whose mothers drank during pregnancy. 2. Assessment in the development of a learning profile for an affected child In both the United States and Italy, educational systems promote the inclusion of children with special needs within regular classrooms whenever possible (educating children within the least restrictive environment) (Fitch, 2002; Lopes et al., 2004; Vitello, 1991). This means that the individual needs of a child with disabilities must be addressed within the context of the regular classroom. The ultimate goal of educating children with alcohol exposure is to determine how best to serve each child in the context of his/her school, community, and home. Dr. Raffaele Tortora, the National Director of Study and Development of Innovations in Education in Italy, spoke about inclusion to a group of educators at Syracuse University. He said, ‘‘Inclusion is not a consideration with us; inclusion intimates that there also can be exclusion. Students with disabilities are simply students. It is a matter of decency. It is a way of life.’’ Using the philosophy of inclusion as the guiding principal, the most productive first step in developing programming for affected children is to determine a clear learning profile for each child. Although children with fetal alcohol syndrome have the same diagnosis, the individual learning profile of each child is unique. Appropriate school interventions provide the necessary academic and functional supports so that the child can develop the necessary skills to become an independent adult. The ability to function as an independent adult begins with an early focus on academic and functional abilities of the individual child. Children with cognitive and behavioral issues related to prenatal alcohol exposures most often come to the
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attention of the educational system because of the learning and/or behavioral issues they display, not because they have a known diagnosis of FAS. When this happens, the schools generally initiate an assessment of the child’s individual abilities and challenges. This assessment most often includes intelligence testing using standardized IQ measures, achievement testing, and specific screening for learning disabilities. On average, intelligence scores of children with prenatal alcohol exposure fall two standard deviations below the mean. Approximately 50% of children with FAS are mentally retarded, however, IQ scores range from severely retarded to high average in this population (Streissguth et al., 1996). Because of the variability of IQ scores in this population and the known deficits in higher order cognitive functioning found in this population (Connor et al., 2000; Kodituwakku et al., 2001; Mattson et al., 1999; Mattson and Riley, 1998; Willford et al., 2004), an individual learning profile of each child must be developed. Many children with a diagnosis of FASD are ineligible for special services because their intellectual abilities often fall within the average range of intelligence. Children who have average intelligence and are prenatally alcohol-exposed benefit most from a battery of tests that can best determine specific issues of attention, verbal learning and recall, verbal memory, auditory memory, spatial memory, auditory processing and verbal processing. In a typical school process, children will be given the following standard battery of tests: an IQ measure, achievement measure, and an adaptive measure. In addition, we propose the use of neurobehavioral testing to better elucidate the individual learning profile of affected children. Children exposed to moderate amounts of alcohol may not show all of the physical features of the full syndrome but may still display neurobehavioral issues, particularly in executive functioning abilities. Executive functioning refers to an individual’s cognitive ability to plan and sequence behavior to efficiently achieve a goal. Neuroscientists evaluate this ability by presenting testing tasks that involve effortful, deliberate actions requiring working memory (holding and manipulating information mentally in order to complete the task successfully). In addition, attentional abilities of the child are also evaluated as part of the executive functioning paradigm. Executive functioning has been the focus of a number of studies with children exposed to alcohol during gestation. Findings have revealed that those individuals with FAS and individuals with known exposure who do not have a diagnosis of FAS exhibit executive functioning difficulties. Mattson et al. (1999) reported executive functioning deficits in children with known prenatal alcohol exposure with and without the diagnosis of FAS. These executive functioning deficits were also seen in children whose intelligence fell in the average range of functioning. Specifically, these children demonstrated marked difficulty in complex working memory related tasks and shifting sets
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(in both cognitive and emotion-based tasks), planning ability, cognitive flexibility, selective inhibition, and concept formation and reasoning. (Kodituwakku et al., 2001). In addition, executive functioning deficits in alcoholexposed children have been found to be closely correlated with reported behavioral issues in these children. It is our belief that a battery of neuropsychological tests targeted at specific areas of functioning can also lend useful information about the child’s learning style, aptitude, and challenges. The information derived from neuropsychological testing of executive functioning in affected individuals can be useful in two specific ways. First, the neurobehavioral effects of alcohol-exposure on developmental outcomes are better understood. And, secondly, results of executive functioning testing provide valuable information regarding attention, memory, problem-solving and inhibitory control; all of which are extremely useful in tailoring interventions to suit the needs of a child. This type of testing assists the family, medical provider, and classroom teacher with a clearer understanding of the issues that interfere with learning and behavior in the classroom, home and community. The next section of this paper outlines the empirically determined deficits often seen in alcohol-exposed children and the functional deficits observed as a result. 2.1. Functional issues related to deficits in executive functioning As described above, executive functioning difficulties are common among children who were prenatally exposed to alcohol (Connor et al., 2000; Kodituwakku et al., 2001; Mattson et al., 1999; Mattson and Riley, 1998; Willford et al., 2004). Deficits in this area interfere with successful completion of some of the simplest tasks of daily living, academic achievement and problem solving. The types of functional issues that may be seen as a result of executive functioning deficits fall into two broad categories: cognition-based difficulties and emotion-related difficulties (Kodituwakku et al., 2001). Cognition-based executive functioning limitations may manifest in the child’s inability to understand and hold in memory the specific sequences of daily living and the academic processes. For example, children with this type of deficit have a difficult time following sequences that are inherent in a typical daily routine, the steps of social exchange, and typical learning sequences. Daily routines are apparent to most of us and do not require much extra cognitive effort to hold in our understanding. This may not be true for a child who has suffered damage from prenatal alcohol exposures. An affected child may need an environmental tool to help him stay on track during the routine of an ordinary day. Similarly, from an early age most of us learn the steps of appropriate social exchange by observing others and being guided by the adults and children with whom we interact. Typically, it is not necessary to teach these steps explicitly. However, for children who have had
prenatal alcohol exposure, the steps of appropriate social interaction are not so apparent and easily understood. Therefore, the steps of social engagement must be taught by rote and eventually learned through repetition. Learning sequences can also be very difficult to grasp for children with FASD. In the process of learning, many tasks require the use of cognition-based executive functioning abilities. One good example of this is arithmetic. Arithmetic is a subject that requires a clear understanding of the relationship between the specific order and function of the numbers with which one is working to derive a correct answer on a given computation. If the order and function of that task are not cognitively held in working memory, and if the specific steps to correctly solve the problem are not understood, then the child will not be successful in completing the arithmetic problem. Children with executive functioning difficulties have trouble holding information in memory for later use (working memory) in solving novel problems, planning a task’s trajectory, and maintaining attention to complete a goal. In the classroom this deficit may manifest itself in the child’s inability to follow directions, retain information previously presented, generalize information from one situation to another, or organize events into a logical sequence or timeline. General organizational abilities also present a challenge to a student who has been exposed to alcohol prenatally. It may be very difficult for that child to organize and keep track of his personal belongings and school materials, independently organize a learning task into a meaningful sequence for completion, and grasp that most tasks contain a beginning, middle, and an end. In addition, working memory deficits interfere with academic skill acquisition. The tools necessary for academic readiness often progress much more slowly for children with FAS. As a result, foundational concept acquisition such as shapes, letters, numbers and words present more of a challenge. Mirsky et al. (1991) model defines attention using a four part theoretical model: focused attention, maintenance of attention, ability to shift attention, and ability to encode new information. Using Mirsky’s model of attention, Claire Coles et al. (1997) compared children diagnosed with FAS with those children who were diagnosed with ADHD. Her research revealed that children with FAS have the most difficulty shifting their attention and encoding new information whereas children with ADHD have more difficulty focusing and sustaining attention. When a child has issues with shifting attention, there is greater potential for that individual to perseverate on a given task. He or she may have extreme difficulty moving from one topic to another, become confused by a change in the routine, and become resistant to transitioning from one place to another. Additionally, life changes such as family membership, moving from one school to another, and changing from one grade to the next may all be highly frustrating and perplexing to a child with this type of attentional challenge.
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Willford et al. (2004) looked at verbal and visuospatial learning and memory with children with moderate prenatal alcohol exposure. They found that moderate prenatal exposure was associated with a generalized deficit in learning (encoding) and memory, impaired learning (encoding) and memory performance in the auditory/verbal domain, and impaired encoding/storage and retrieval processes. In other words, these children have a hard time taking in new verbal information through auditory channels and holding that information in memory for use at a later time. This was consistent with previous studies done with children who had been exposed to heavy amounts of alcohol (Mattson and Riley, 1998; Mattson and Roebuck, 2002; Mattson et al., 1996; Streissguth et al., 1989). These difficulties functionally translate into problems adequately recalling auditory verbal information, following directions presented in verbal form, and the ability to generalize information from one application to another. These characteristics of the fetal alcohol exposed child lead to what can be called the Speech/Comprehension Paradox. Often children with FAS have relatively good vocabularies and are loquacious. However, because of the deficits in verbal memory, most often the comprehension level lags behind the expressive ability and makes the child appear to be more capable than he/she actually is. Emotion-related executive functioning deficits may manifest themselves in the inability to inhibit responses. In other words, children with prenatal alcohol exposure often have difficulty inhibiting their responses to other people and circumstances. This is seen when children speak out inappropriately or act out inappropriately. This also may be manifested in the child being overly active. In the classroom, a child may speak out before thinking about what is acceptable in that situation. In fact, understanding what is appropriate in a given circumstance may be difficult for a child with FASD. The child with FASD may also have difficulty controlling his/her emotions and may act out toward others. Acting before considering the consequences of the behavior is a hallmark of children with FAS. For example, children with FAS often are socially intrusive to those around them; they will encroach on the personal space of peers, have difficulty inhibiting themselves to wait their turn, and blurt out inappropriate communication. These are examples of the challenges this population has with social pragmatics (the rules and steps of social interaction). Logically, these types of deficits interfere greatly with an affected child’s ability to make friends and maintain relationships. Before the child can understand his own learning issues, however, the professionals working with the child must fully evaluate and assess the child’s abilities to help identify the strengths and challenges of the child, including environmental and academic supports. This is best done by using a combination of tools and assessment processes. Children’s neurocognitive abilities, academic achievement, behavioral profile, and adaptive skills must all be studied to
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determine the specific areas of need for the child. In addition, an assessment of the learning environment should be included to determine what environmental supports are needed. 2.2. Diagnosis vs. assessment, making the distinction Once the diagnosis is made, the focus turns to determining the individual needs of each child through assessment processes. The assessment(s) will determine what special supports and modifications will be required for each student. The assessment process feeds directly into the actual goals and objectives that will be included on the individualized plan for instruction in the classroom. Often schools leap from the eligibility evaluation straight to the goals and objectives of the individualized plan without fully assessing the current skill levels of the child and the specific needs the child has in the various school settings. There are many different ways a comprehensive school assessment can be accomplished. Ideally, the assessment should contain information from a myriad of sources: parents, previous teachers, and observation of the child in a variety of settings. Pairing the assessment information and the empirical knowledge we have about children with FASD (their possible cognitive, behavioral, and academic challenges), we can begin to create an individual profile for each child. The assessment information and known deficits to look for will help in the determination of the types of school intervention methods to apply. It is important at this juncture to reiterate the importance of considering each child and his or her unique learning profile in the process of planning interventions. Each child with FASD is an individual and the kinds of support they will need will reflect their particular situation. 2.3. Functional classroom assessments Functional or real life abilities of the child must be assessed to understand the functional strengths and challenges of each child. This will supplement the diagnostic testing (IQ, academic achievement, behavioral, and neuropsychological) results, family information, and actual school achievement information. How does one embark on this functional assessment process? First, the assessment process must include comprehensive observation of the child and it must be done in a variety of natural settings. This helps the observer see how the child performs in different settings and assesses the impact of the environmental conditions on his abilities. Observations should be conducted on at least two to three different occasions in several different setting so that the observer can account for setting-triggered events and assess the child over time. It is very important to conduct observations across a variety settings to shed light on the problems that may be occurring in a specific setting. Multiple observations allow the observer to determine current abilities and
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establish reasonable expectations. This process also enhances one’s understanding of what conditions may be necessary for the child to perform optimally. It also helps to determine what conditions might disrupt effective functioning. The following key factors should be observed during the observation time: (1) skills, (2) attention, (3) independence, (4) social interactions, (5) functional language, (6) strengths and interests, and (7) behavior. Once this informal assessment is completed and a functional behavioral assessment is completed, the school team, including the family, can utilize the information to create a specific learning profile for the child. The information gained through formal testing and these assessment processes provides a comprehensive packet of information from which initial program planning can begin. The child’s needs as well as the child’s strengths will be revealed in the process of the formal evaluation and the informal assessment. This information is then pieced together like a puzzle to reveal a specific learning profile for each child. Each learning profile is unique just as each human being is unique. Although there may be similarities among profiles, each profile should reflect the unique picture of the particular child—no two learning profiles are ever the same.
ingly. Finally, because children with FASD often have difficulty transferring information from one situation to another, it is important to recognize this difficulty in the implementation phase. Environmental structure (functional routines and structured teaching) are excellent tools to use with the FASD population. Functional routines occur naturally for all individuals and provide a structure that lends predictability and a clear understanding of what activities will happen and in what sequence to complete a routine. Functional routines provide opportunities for parents and teachers to provide systematic instruction. Teaching functional routines requires, first, identifying skills, routines or activities that can be taught through routine practice such as dressing, getting ready for bed, bathing, etc. A teaching plan must be created for teaching a functional routine. The teaching plan will include developing strategies/objectives, deciding where an activity will be taught, what materials will be needed, the steps involved, the cues that will indicate the beginning of the routine, and what responses will indicate correct and incorrect performance (the reinforcement procedures promoting independence). Teaching functional routines early in a child’s life provides clarity and organization on which the child comes to depend.
3. Interventions 3.2. Visual structure 3.1. Structure and systematic teaching as potentially effective methods for children with FASD If a child with FASD is placed with age peers, his range of abilities may not necessarily fall in the range of abilities compared to his classroom peers. Be certain to take the time to fully understand the child’s present levels of performance when planning your instructional activities so that those activities are appropriate for his developmental abilities. In addition, one must carefully consider the modifications and supports that will be necessary in the environment so that the child can be provided the support needed. It is helpful to think of the environment as an external nervous system of the child, a place where external (environmental) supports can be implemented to bolster the deficit areas of the child. Because of the learning differences known to exist with many children who have FASD, structure is a very helpful environmental support to activate. Placing appropriate structure in the environment is imperative for success with children who have FASD. Structuring the teaching environment helps the child know what is expected of him. Although structuring is helpful, it is important that adults are mindful when structure is appropriate and when structure turns to control. At times, a child’s escalating behavior can make an adult seek more control over the child. When this scenario presents itself, it is important, as the teacher, to know when structure turns to control. At this juncture it is advisable to re-assess what is not working and restructure the environment accord-
Visual structure makes the environment and learning tasks predictable and visually clear. Building structure into a child’s day not only makes life more predictable but it provides external supports that assist the child’s ability to be organized. External structuring techniques compensate for and aid the child’s deficit areas (e.g., executive functioning, set shifting, working memory and attention). Visual structure includes physical structure of the environment that decreases both visual and auditory distraction, the use of individualized daily schedules, incorporates routines, and includes tasks structure that provides visual organization, clarity, and instructions (Schopler and Mesibov, 1995). Some examples of visual organization include using containers to separate materials, taping off sections of the room for specific activity centers, and using assigned carpet squares for circle time. Visual clarity is achieved through highlighting relevant and important information pertinent to a task or activity, color coding each content area, and labeling tasks or work centers. Visual instructions provide the child with a clear visual cue regarding the sequence to complete a task. Some examples of visual instructions include placing arrows to direct the student, numbering the steps of a given sequence, providing written steps of an instruction, and providing a finished example of the assigned task so the child can see what is expected. A commonly used example of a visual structuring tool is a schedule. Schedules come in many different forms and can be used for many purposes. Most everyone uses some kind of daily schedule to get through their day or week.
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Some make lists, others fill in a calendar, and still others use a daily planner. These visual schedules help indicate what will occur during the day and in what sequence events will happen. Children with FASD benefit from visual schedules in that they help to alleviate anxiety during transitions, give information that helps them anticipate and predict what will happen next and in what sequence. Schedules also help to provide motivation by giving the child a concrete reference for how long his day will be. Because the schedule can be changed as the needs of the environment change, these schedules often help build flexibility into the child’s thinking. These tools help the child learn to work more independently in that they help the child rely on the schedule (a thing) rather than the teacher (a person). 3.3. Environmental structure Environmental structure helps provide the best conditions for learning as well as define what occurs in a particular location. For example, a child with FASD may be able to complete difficult academic activities that require vigilant concentration and attention if they are provided a space that is clear from visual and auditory distractions. Children with FASD are also often distracted by visual clutter. Therefore, keeping the environment simple with a minimum of decorations can be helpful. Another example of environmental structure involves clearly defining work centers for the child. For example, there may be a place in the classroom for arithmetic, another place for reading, another for the computer, etc. This enhances the student’s understanding of their environment and what the expectations are, minimizing the potential for behavior challenges. 3.4. Task structure Specific task structuring is also very beneficial. This is extremely useful in the success of the child with FASD in that task structuring provides a clear system for the child to follow. A task can be structured so that the child understands what task expectations there are, how many tasks need completing, when one task is finished, and what task comes next. In addition, a specific task can be structured in a way that the child can clearly understand the steps of the task. The structure can provide clarity of the beginning, middle, and end of the task. Sometimes an example of the correctly completed task can be useful in this process. In other circumstances, color-coded materials can delineate the first, second, and third step of a task. 3.5. Cognitive control therapy as a potentially useful intervention process for children with FASD Currently our team of researchers in the United States and South Africa is pilot testing school intervention
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modalities for children who have FAS or an FASD diagnosis. The most promising intervention method from our current research is an intervention called Cognitive Control Therapy (Santostefano, 1988). This is a progressive skill-building intervention process that culminates in the child’s ability to understand his own learning style and learning challenges. This metacognitive approach is showing promising results. Before discussing the specifics of the cognitive control therapy paradigm it is important to discuss cognition and how the theory of metacognitive processes fits in with what we are trying to accomplish. From Esquirol (1838) who first made the distinction between mental deficiency and mental illness, to Gardner (1983) who promoted the theory of multiple intelligences by identifying eight intellectual competencies, many theorists have promoted varied models to describe cognition and intellectual ability. Regardless of the theory to which one ascribes, current views assign importance to the notion that intelligence/ cognition is both biological and developmental and is modified by experience. According to Horn (1989) environmental experiences vary among ‘‘individuals in intensity, length, and quality. The different intelligences that emerge thus reflect a variety of neurological, experiential, developmental, genetic, and life achievement influences’’ (Horn, 1989). One intellectual/cognitive theoretical concept that is put forth is that of information-processing (Campione and Brown, 1978). Information-processing theory focuses on the ways individuals create mental representations while receiving input and then how that information is more deeply processed. Information-processing models conceive of human cognition as occurring in a series of discrete stages. Information is received by an individual and then passed on to a higher order stage for further mental processing. The factors of attention, memory span, retention, and speed of information encoding and decoding all play a part in the ability to receive initial input. These are linked to the perceptual skills of individuals and reflect sensory ability and nervous system integrity. Once the information is received, it is then processed more fully using higher order mental processes (executive system). These executive controls refer to environmentally learned factors that guide problem solving such as: (1) knowledge base, (2) schemes, (3) control processes, and (4) metacognition. These interdependent factors include existing knowledge, attention, planning, retrieval of information from long term memory, working memory, assimilating or accommodating new information, and then using strategies such as self-checking and rehearsal to achieve greater generalization of the information (cognitive control processes). Finally, the information is filtered through metacognitive processes. Metacognition involves the ability to have an awareness of one’s own thought processes and strategies. By having this ability, one knows whether a strategy worked or did not work when learning a piece of new information. In this way, metacognitive
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processes allow one to understand how certain cognitive strategies help you or hinder the ability to learn new information (Borkowski, 1985). This tenant of interrelationship between the internal experience and the external environment are at the heart of the cognitive philosophy that Sebastiano Santostefano promotes in his cognitive control model. The origination of the cognitive control concept came from the work of George Klein (Klein, 1953; Klein and Schlesinger, 1949). He attempted to interrelate cognition, affect, and personality. He observed individuals consistently using certain cognitive strategies to approach, avoid, select, compare, and cluster information. He contended that individuals use these cognitive strategies to coordinate information from external reality and from the internal environment of emotions, fantasies, and motives in order to remain in adaptive control of information. This approach adheres to the concept that, from birth, individuals have a number of cognitive controls available to them. Infants are born with an inability to clearly direct their behavior and that behavior proceeds from a state of lack of integration to a more increasing state of differentiation, articulation, and integration. Cognitive controls (patterns of mental processing) are intervening variables by which motor behavior, perception, memory, and other aspects of cognition are organized and eventually coordinated to meet the demands of the individual environment. The metacognitive therapy targets the following five patterns of mental processing (cognitive controls): (1) body ego-tempo regulation—the manner in which an individual represents the body-self and mentally regulates body movements, (2) focal attention—the manner in which an individual scans a field of information, (3) field articulation—the manner in which an individual attends selectively to a particular stimulus while ignoring others; (4) levelingsharpening—the manner in which an individual compares images of past information with perceptions of present information, and (5) equivalence range—the manner in which an individual categorized and conceptualized information. In South Africa, our team has begun to systematically investigate the effectiveness of the use of cognitive control therapy with a cohort of children who are diagnosed with FASD. One hundred and one children identified as either FASD or non-FASD controls are participants in the study. The early results of this intervention are promising. Significant improvements in behavior are being seen after six months of interventions using cognitive control therapy. These behavioral improvements are being measured using the Achenbach (1991). Although premature to determine the full extent of benefits from this intervention method, early results provide hope regarding the use of metacognitive intervention methods with the alcohol-exposed population. 3.6. The role of the family The family of the child is instrumental in defining and guiding the school program for the child with FAS.
Professionals provide valuable expertise toward the development of and educational programs, however, professionals move in and out of a child’s life over the educational career and are financially compensated for their services. Generally, a professional will not follow a child through his life span. Therefore, the professional must recognize and regard the hopes, wishes, and desires families hold for their children with FAS. One good resource to help schools work with families to set long term goals is a educational planning tool created by Michael Giangreco titled choosing outcomes and accommodations for children (COACH) (Giangreco et al., 2000).
4. Conclusion Once those educating and supporting the child with FASD understand the specific learning challenges of each student, appropriate interventions can be developed to help assist the child toward a better educational outcome. Armed with adequate diagnostic and assessment information, a school team can utilize that information to create a positive school program for a child. Two potential intervention methods are described in this paper. The first method involves building external supports into the learning environment using structuring tools and systematic teaching processes. Because these intervention tools are created and tailored to the individual learning needs of each child, it is necessary to assess how well they are working and if the tools need to be adjusted or changed in any way. The second method, cognitive control therapy, is being tested with promising results in a cohort of children in South Africa. The results of the study are showing that utilizing metacognitive processes with affected children may be useful in moderating and mediating their behavior in the school environment. Utilizing these types of interventions with students who have FASD is not static but a dynamic ongoing process. For children with FASD, the school environment can be daunting and difficult to successfully navigate academically and socially. This may make school a negative experience for the child. Helping the child to metacognitively understand his/her learning style and challenges may assist in the child’s ability to moderate his/her own behavior appropriately. Structuring and systematic teaching techniques appropriately tailored to each child can create predictability and understanding for the student and therefore provide a sense of safety and comfort so the child. When children feel that they understand their own strengths and challenges and when children feel comfortable and confident of the environment around them, they will feel more competent and hopefully be inclined to take more learning risks. Enhanced skill development will be the result of increased risk-taking in the learning environment. Increased skill development promotes a more positive sense of self and an enhanced quality of life.
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References Achenbach, T.M., 1991. Manual for the Child Behavior Checklist. Department of Psychiatry, University of Vermont, Burlington, VT. Borkowski, J.G., 1985. Signs of intelligence: strategy generalization and meta-cognition. In: Yussen, S. (Ed.), The Development of Reflection in Children. Academic Press, San Diego, pp. 105–144. Campione, J.C., Brown, A.L., 1978. Toward a theory of intelligence: contributions from research with retarded children. Intelligence 2, 279–304. Coles, C.D., Platzman, K.A., Raskind-Hood, C.L., Brown, R.T., Falek, A., Smith, I.E., 1997. A comparison of children affected by prenatal alcohol exposure and attention deficit, hyperactivity disorder. Alcoholism Clinical and Experimental Research 21, 150–161. Connor, P.D., Sampson, P.D., Bookstein, F.L., Barr, H.M., Streissguth, A.P., 2000. Direct and indirect effects of prenatal alcohol damage on executive function. Developmental Neuropsychology 18, 331–354. Esquirol, J.E., 1838. A Treatise on Insanity. Des Maladies Mentales. Fitch, E.F., 2002. Disability and inclusion: from labeling deviance to social valuing. Educational Theory 52, 463–477. Gardner, H., 1983. Frames of Mind: The Theory of Multiple Intelligences. Basic Books, New York. Giangreco, M.F., Cloninger, C.J., Iverson, V.S., 2000. Choosing Outcomes and Accommodations for Children: A Guide to Educational Planning for Students with Disabilities, second ed. Brookes Publishing Co., Baltimore, MD. Horn, J.L., 1989. Cognitive diversity: a framework for learning. In: Ackerman, P.L., Sternberg, R.J., Glaser, R. (Eds.), Learning and Individual Differences: Advances in Theory and Research. W.H. Freeman and Co, New York, NY, pp. 61–116. Jacobson, J.L., Jacobson, S.W., 1994. Prenatal alcohol exposure and neurobehavioral development: where is the threshold? Alcohol Health and Research World 18 (1), 30–36. Klein, G.S., 1953. Cognitive Control and Motivation. Scientific American Reader, New York. Klein, G.S., Schlesinger, H.J., 1949. Where is the perceiver in perceptual theory? Journal of Personality 18, 32–47. Kodituwakku, P.W., Kalberg, W.O., May, P.A., 2001. The effects of prenatal alcohol exposure on executive functioning. Alcohol Health and Research World 25 (3), 192–198. Lopes, J., Monteiro, I., Sil, V., Quinn, M.M., 2004. Teachers’ perceptions about teaching problem students in regular classrooms. Education and Treatment of Children 27, 394–419.
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Neuroscience and Biobehavioral Reviews 31 (2007) 278–285 www.elsevier.com/locate/neubiorev
Review
FASD: What types of intervention and rehabilitation are useful? Wendy O. Kalberg, David Buckley The University of New Mexico, Center on Alcoholism, Substance Abuse and Addictions, 2650 Yale SE, Albuquerque, NM 87106, USA
Abstract Fetal alcohol spectrum disorders (FASD) occurs worldwide when children are prenatally exposed to alcohol. This paper discusses recent findings regarding the neuropsychological and behavioral effects of prenatal alcohol exposure and how it impacts the developmental and functional abilities of children with FASD. Specifically, recent research focus has concentrated on studies to elucidate a neurobehavioral phenotype for the alcohol-exposed population. As a result, the FASD field has learned what types of neurobehavioral issues occur most frequently with these children. This paper discusses how that information can be used to inform school assessment, intervention planning, and support. Strategies for functional assessment, individualized planning, structured teaching, and developments in cognitive-behavioral methods are described. r 2006 Elsevier Ltd. All rights reserved. Keywords: Fetal alcohol spectrum disorders; Neurobehavioral research; Intervention planning
Contents 1. 2.
3.
4.
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Assessment in the development of a learning profile for an affected child . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1. Functional issues related to deficits in executive functioning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2. Diagnosis vs. assessment, making the distinction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3. Functional classroom assessments. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Interventions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1. Structure and systematic teaching as potentially effective methods for children with FASD . . . . . . . . . . . . . . . . . . . 3.2. Visual structure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3. Environmental structure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4. Task structure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5. Cognitive control therapy as a potentially useful intervention process for children with FASD . . . . . . . . . . . . . . . . 3.6. The role of the family . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1. Introduction It is now known that fetal alcohol syndrome (FAS) exists in most areas of the world. A recent study in the Lazio Corresponding author. Tel.: +1 505 925 2306; fax: +1 505 925 2313.
E-mail address: [email protected] (W.O. Kalberg). 0149-7634/$ - see front matter r 2006 Elsevier Ltd. All rights reserved. doi:10.1016/j.neubiorev.2006.06.014
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Region of Italy near Rome found that some children exposed to alcohol have the features of fetal alcohol syndrome or a related fetal alcohol spectrum disorder (FASD) (May et al., 2006). The developmental outcome of children exposed to alcohol prenatally is dependent on a wide range of factors including: the quantity and timing of the alcohol exposure; maternal age; nutritional status of
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the mother; and parents’ intelligence and level of education. Therefore, the effect of prenatal alcohol exposure on a child’s development is highly variable and not all children who have been exposed to substantial amounts of alcohol display all of the features of fetal alcohol syndrome. Researchers have had difficulty determining what prenatal alcohol exposures cause adverse neurobehavioral findings. Some researchers suggest that seven standard drinks per week may be enough to cause neurobehavioral challenges for a child (Jacobson and Jacobson, 1994). There are a complex set of factors to consider when determining the adverse neurobehavioral effects of prenatal alcohol exposure. There are genetic factors, environmental factors (nutrition of the child, general well-being of the child, parenting style, etc.), and maternal health and nutrition factors which all contribute to the child’s capability and developmental aptitude. Because the factors contributing to developmental issues are so complex and the developmental outcomes so variable, those studying FAS have begun to discuss a continuum of affect that occurs with children who have had prenatal alcohol exposure. FASD describes the full spectrum of affects seen in children whose mothers drank during pregnancy. 2. Assessment in the development of a learning profile for an affected child In both the United States and Italy, educational systems promote the inclusion of children with special needs within regular classrooms whenever possible (educating children within the least restrictive environment) (Fitch, 2002; Lopes et al., 2004; Vitello, 1991). This means that the individual needs of a child with disabilities must be addressed within the context of the regular classroom. The ultimate goal of educating children with alcohol exposure is to determine how best to serve each child in the context of his/her school, community, and home. Dr. Raffaele Tortora, the National Director of Study and Development of Innovations in Education in Italy, spoke about inclusion to a group of educators at Syracuse University. He said, ‘‘Inclusion is not a consideration with us; inclusion intimates that there also can be exclusion. Students with disabilities are simply students. It is a matter of decency. It is a way of life.’’ Using the philosophy of inclusion as the guiding principal, the most productive first step in developing programming for affected children is to determine a clear learning profile for each child. Although children with fetal alcohol syndrome have the same diagnosis, the individual learning profile of each child is unique. Appropriate school interventions provide the necessary academic and functional supports so that the child can develop the necessary skills to become an independent adult. The ability to function as an independent adult begins with an early focus on academic and functional abilities of the individual child. Children with cognitive and behavioral issues related to prenatal alcohol exposures most often come to the
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attention of the educational system because of the learning and/or behavioral issues they display, not because they have a known diagnosis of FAS. When this happens, the schools generally initiate an assessment of the child’s individual abilities and challenges. This assessment most often includes intelligence testing using standardized IQ measures, achievement testing, and specific screening for learning disabilities. On average, intelligence scores of children with prenatal alcohol exposure fall two standard deviations below the mean. Approximately 50% of children with FAS are mentally retarded, however, IQ scores range from severely retarded to high average in this population (Streissguth et al., 1996). Because of the variability of IQ scores in this population and the known deficits in higher order cognitive functioning found in this population (Connor et al., 2000; Kodituwakku et al., 2001; Mattson et al., 1999; Mattson and Riley, 1998; Willford et al., 2004), an individual learning profile of each child must be developed. Many children with a diagnosis of FASD are ineligible for special services because their intellectual abilities often fall within the average range of intelligence. Children who have average intelligence and are prenatally alcohol-exposed benefit most from a battery of tests that can best determine specific issues of attention, verbal learning and recall, verbal memory, auditory memory, spatial memory, auditory processing and verbal processing. In a typical school process, children will be given the following standard battery of tests: an IQ measure, achievement measure, and an adaptive measure. In addition, we propose the use of neurobehavioral testing to better elucidate the individual learning profile of affected children. Children exposed to moderate amounts of alcohol may not show all of the physical features of the full syndrome but may still display neurobehavioral issues, particularly in executive functioning abilities. Executive functioning refers to an individual’s cognitive ability to plan and sequence behavior to efficiently achieve a goal. Neuroscientists evaluate this ability by presenting testing tasks that involve effortful, deliberate actions requiring working memory (holding and manipulating information mentally in order to complete the task successfully). In addition, attentional abilities of the child are also evaluated as part of the executive functioning paradigm. Executive functioning has been the focus of a number of studies with children exposed to alcohol during gestation. Findings have revealed that those individuals with FAS and individuals with known exposure who do not have a diagnosis of FAS exhibit executive functioning difficulties. Mattson et al. (1999) reported executive functioning deficits in children with known prenatal alcohol exposure with and without the diagnosis of FAS. These executive functioning deficits were also seen in children whose intelligence fell in the average range of functioning. Specifically, these children demonstrated marked difficulty in complex working memory related tasks and shifting sets
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(in both cognitive and emotion-based tasks), planning ability, cognitive flexibility, selective inhibition, and concept formation and reasoning. (Kodituwakku et al., 2001). In addition, executive functioning deficits in alcoholexposed children have been found to be closely correlated with reported behavioral issues in these children. It is our belief that a battery of neuropsychological tests targeted at specific areas of functioning can also lend useful information about the child’s learning style, aptitude, and challenges. The information derived from neuropsychological testing of executive functioning in affected individuals can be useful in two specific ways. First, the neurobehavioral effects of alcohol-exposure on developmental outcomes are better understood. And, secondly, results of executive functioning testing provide valuable information regarding attention, memory, problem-solving and inhibitory control; all of which are extremely useful in tailoring interventions to suit the needs of a child. This type of testing assists the family, medical provider, and classroom teacher with a clearer understanding of the issues that interfere with learning and behavior in the classroom, home and community. The next section of this paper outlines the empirically determined deficits often seen in alcohol-exposed children and the functional deficits observed as a result. 2.1. Functional issues related to deficits in executive functioning As described above, executive functioning difficulties are common among children who were prenatally exposed to alcohol (Connor et al., 2000; Kodituwakku et al., 2001; Mattson et al., 1999; Mattson and Riley, 1998; Willford et al., 2004). Deficits in this area interfere with successful completion of some of the simplest tasks of daily living, academic achievement and problem solving. The types of functional issues that may be seen as a result of executive functioning deficits fall into two broad categories: cognition-based difficulties and emotion-related difficulties (Kodituwakku et al., 2001). Cognition-based executive functioning limitations may manifest in the child’s inability to understand and hold in memory the specific sequences of daily living and the academic processes. For example, children with this type of deficit have a difficult time following sequences that are inherent in a typical daily routine, the steps of social exchange, and typical learning sequences. Daily routines are apparent to most of us and do not require much extra cognitive effort to hold in our understanding. This may not be true for a child who has suffered damage from prenatal alcohol exposures. An affected child may need an environmental tool to help him stay on track during the routine of an ordinary day. Similarly, from an early age most of us learn the steps of appropriate social exchange by observing others and being guided by the adults and children with whom we interact. Typically, it is not necessary to teach these steps explicitly. However, for children who have had
prenatal alcohol exposure, the steps of appropriate social interaction are not so apparent and easily understood. Therefore, the steps of social engagement must be taught by rote and eventually learned through repetition. Learning sequences can also be very difficult to grasp for children with FASD. In the process of learning, many tasks require the use of cognition-based executive functioning abilities. One good example of this is arithmetic. Arithmetic is a subject that requires a clear understanding of the relationship between the specific order and function of the numbers with which one is working to derive a correct answer on a given computation. If the order and function of that task are not cognitively held in working memory, and if the specific steps to correctly solve the problem are not understood, then the child will not be successful in completing the arithmetic problem. Children with executive functioning difficulties have trouble holding information in memory for later use (working memory) in solving novel problems, planning a task’s trajectory, and maintaining attention to complete a goal. In the classroom this deficit may manifest itself in the child’s inability to follow directions, retain information previously presented, generalize information from one situation to another, or organize events into a logical sequence or timeline. General organizational abilities also present a challenge to a student who has been exposed to alcohol prenatally. It may be very difficult for that child to organize and keep track of his personal belongings and school materials, independently organize a learning task into a meaningful sequence for completion, and grasp that most tasks contain a beginning, middle, and an end. In addition, working memory deficits interfere with academic skill acquisition. The tools necessary for academic readiness often progress much more slowly for children with FAS. As a result, foundational concept acquisition such as shapes, letters, numbers and words present more of a challenge. Mirsky et al. (1991) model defines attention using a four part theoretical model: focused attention, maintenance of attention, ability to shift attention, and ability to encode new information. Using Mirsky’s model of attention, Claire Coles et al. (1997) compared children diagnosed with FAS with those children who were diagnosed with ADHD. Her research revealed that children with FAS have the most difficulty shifting their attention and encoding new information whereas children with ADHD have more difficulty focusing and sustaining attention. When a child has issues with shifting attention, there is greater potential for that individual to perseverate on a given task. He or she may have extreme difficulty moving from one topic to another, become confused by a change in the routine, and become resistant to transitioning from one place to another. Additionally, life changes such as family membership, moving from one school to another, and changing from one grade to the next may all be highly frustrating and perplexing to a child with this type of attentional challenge.
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Willford et al. (2004) looked at verbal and visuospatial learning and memory with children with moderate prenatal alcohol exposure. They found that moderate prenatal exposure was associated with a generalized deficit in learning (encoding) and memory, impaired learning (encoding) and memory performance in the auditory/verbal domain, and impaired encoding/storage and retrieval processes. In other words, these children have a hard time taking in new verbal information through auditory channels and holding that information in memory for use at a later time. This was consistent with previous studies done with children who had been exposed to heavy amounts of alcohol (Mattson and Riley, 1998; Mattson and Roebuck, 2002; Mattson et al., 1996; Streissguth et al., 1989). These difficulties functionally translate into problems adequately recalling auditory verbal information, following directions presented in verbal form, and the ability to generalize information from one application to another. These characteristics of the fetal alcohol exposed child lead to what can be called the Speech/Comprehension Paradox. Often children with FAS have relatively good vocabularies and are loquacious. However, because of the deficits in verbal memory, most often the comprehension level lags behind the expressive ability and makes the child appear to be more capable than he/she actually is. Emotion-related executive functioning deficits may manifest themselves in the inability to inhibit responses. In other words, children with prenatal alcohol exposure often have difficulty inhibiting their responses to other people and circumstances. This is seen when children speak out inappropriately or act out inappropriately. This also may be manifested in the child being overly active. In the classroom, a child may speak out before thinking about what is acceptable in that situation. In fact, understanding what is appropriate in a given circumstance may be difficult for a child with FASD. The child with FASD may also have difficulty controlling his/her emotions and may act out toward others. Acting before considering the consequences of the behavior is a hallmark of children with FAS. For example, children with FAS often are socially intrusive to those around them; they will encroach on the personal space of peers, have difficulty inhibiting themselves to wait their turn, and blurt out inappropriate communication. These are examples of the challenges this population has with social pragmatics (the rules and steps of social interaction). Logically, these types of deficits interfere greatly with an affected child’s ability to make friends and maintain relationships. Before the child can understand his own learning issues, however, the professionals working with the child must fully evaluate and assess the child’s abilities to help identify the strengths and challenges of the child, including environmental and academic supports. This is best done by using a combination of tools and assessment processes. Children’s neurocognitive abilities, academic achievement, behavioral profile, and adaptive skills must all be studied to
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determine the specific areas of need for the child. In addition, an assessment of the learning environment should be included to determine what environmental supports are needed. 2.2. Diagnosis vs. assessment, making the distinction Once the diagnosis is made, the focus turns to determining the individual needs of each child through assessment processes. The assessment(s) will determine what special supports and modifications will be required for each student. The assessment process feeds directly into the actual goals and objectives that will be included on the individualized plan for instruction in the classroom. Often schools leap from the eligibility evaluation straight to the goals and objectives of the individualized plan without fully assessing the current skill levels of the child and the specific needs the child has in the various school settings. There are many different ways a comprehensive school assessment can be accomplished. Ideally, the assessment should contain information from a myriad of sources: parents, previous teachers, and observation of the child in a variety of settings. Pairing the assessment information and the empirical knowledge we have about children with FASD (their possible cognitive, behavioral, and academic challenges), we can begin to create an individual profile for each child. The assessment information and known deficits to look for will help in the determination of the types of school intervention methods to apply. It is important at this juncture to reiterate the importance of considering each child and his or her unique learning profile in the process of planning interventions. Each child with FASD is an individual and the kinds of support they will need will reflect their particular situation. 2.3. Functional classroom assessments Functional or real life abilities of the child must be assessed to understand the functional strengths and challenges of each child. This will supplement the diagnostic testing (IQ, academic achievement, behavioral, and neuropsychological) results, family information, and actual school achievement information. How does one embark on this functional assessment process? First, the assessment process must include comprehensive observation of the child and it must be done in a variety of natural settings. This helps the observer see how the child performs in different settings and assesses the impact of the environmental conditions on his abilities. Observations should be conducted on at least two to three different occasions in several different setting so that the observer can account for setting-triggered events and assess the child over time. It is very important to conduct observations across a variety settings to shed light on the problems that may be occurring in a specific setting. Multiple observations allow the observer to determine current abilities and
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establish reasonable expectations. This process also enhances one’s understanding of what conditions may be necessary for the child to perform optimally. It also helps to determine what conditions might disrupt effective functioning. The following key factors should be observed during the observation time: (1) skills, (2) attention, (3) independence, (4) social interactions, (5) functional language, (6) strengths and interests, and (7) behavior. Once this informal assessment is completed and a functional behavioral assessment is completed, the school team, including the family, can utilize the information to create a specific learning profile for the child. The information gained through formal testing and these assessment processes provides a comprehensive packet of information from which initial program planning can begin. The child’s needs as well as the child’s strengths will be revealed in the process of the formal evaluation and the informal assessment. This information is then pieced together like a puzzle to reveal a specific learning profile for each child. Each learning profile is unique just as each human being is unique. Although there may be similarities among profiles, each profile should reflect the unique picture of the particular child—no two learning profiles are ever the same.
ingly. Finally, because children with FASD often have difficulty transferring information from one situation to another, it is important to recognize this difficulty in the implementation phase. Environmental structure (functional routines and structured teaching) are excellent tools to use with the FASD population. Functional routines occur naturally for all individuals and provide a structure that lends predictability and a clear understanding of what activities will happen and in what sequence to complete a routine. Functional routines provide opportunities for parents and teachers to provide systematic instruction. Teaching functional routines requires, first, identifying skills, routines or activities that can be taught through routine practice such as dressing, getting ready for bed, bathing, etc. A teaching plan must be created for teaching a functional routine. The teaching plan will include developing strategies/objectives, deciding where an activity will be taught, what materials will be needed, the steps involved, the cues that will indicate the beginning of the routine, and what responses will indicate correct and incorrect performance (the reinforcement procedures promoting independence). Teaching functional routines early in a child’s life provides clarity and organization on which the child comes to depend.
3. Interventions 3.2. Visual structure 3.1. Structure and systematic teaching as potentially effective methods for children with FASD If a child with FASD is placed with age peers, his range of abilities may not necessarily fall in the range of abilities compared to his classroom peers. Be certain to take the time to fully understand the child’s present levels of performance when planning your instructional activities so that those activities are appropriate for his developmental abilities. In addition, one must carefully consider the modifications and supports that will be necessary in the environment so that the child can be provided the support needed. It is helpful to think of the environment as an external nervous system of the child, a place where external (environmental) supports can be implemented to bolster the deficit areas of the child. Because of the learning differences known to exist with many children who have FASD, structure is a very helpful environmental support to activate. Placing appropriate structure in the environment is imperative for success with children who have FASD. Structuring the teaching environment helps the child know what is expected of him. Although structuring is helpful, it is important that adults are mindful when structure is appropriate and when structure turns to control. At times, a child’s escalating behavior can make an adult seek more control over the child. When this scenario presents itself, it is important, as the teacher, to know when structure turns to control. At this juncture it is advisable to re-assess what is not working and restructure the environment accord-
Visual structure makes the environment and learning tasks predictable and visually clear. Building structure into a child’s day not only makes life more predictable but it provides external supports that assist the child’s ability to be organized. External structuring techniques compensate for and aid the child’s deficit areas (e.g., executive functioning, set shifting, working memory and attention). Visual structure includes physical structure of the environment that decreases both visual and auditory distraction, the use of individualized daily schedules, incorporates routines, and includes tasks structure that provides visual organization, clarity, and instructions (Schopler and Mesibov, 1995). Some examples of visual organization include using containers to separate materials, taping off sections of the room for specific activity centers, and using assigned carpet squares for circle time. Visual clarity is achieved through highlighting relevant and important information pertinent to a task or activity, color coding each content area, and labeling tasks or work centers. Visual instructions provide the child with a clear visual cue regarding the sequence to complete a task. Some examples of visual instructions include placing arrows to direct the student, numbering the steps of a given sequence, providing written steps of an instruction, and providing a finished example of the assigned task so the child can see what is expected. A commonly used example of a visual structuring tool is a schedule. Schedules come in many different forms and can be used for many purposes. Most everyone uses some kind of daily schedule to get through their day or week.
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Some make lists, others fill in a calendar, and still others use a daily planner. These visual schedules help indicate what will occur during the day and in what sequence events will happen. Children with FASD benefit from visual schedules in that they help to alleviate anxiety during transitions, give information that helps them anticipate and predict what will happen next and in what sequence. Schedules also help to provide motivation by giving the child a concrete reference for how long his day will be. Because the schedule can be changed as the needs of the environment change, these schedules often help build flexibility into the child’s thinking. These tools help the child learn to work more independently in that they help the child rely on the schedule (a thing) rather than the teacher (a person). 3.3. Environmental structure Environmental structure helps provide the best conditions for learning as well as define what occurs in a particular location. For example, a child with FASD may be able to complete difficult academic activities that require vigilant concentration and attention if they are provided a space that is clear from visual and auditory distractions. Children with FASD are also often distracted by visual clutter. Therefore, keeping the environment simple with a minimum of decorations can be helpful. Another example of environmental structure involves clearly defining work centers for the child. For example, there may be a place in the classroom for arithmetic, another place for reading, another for the computer, etc. This enhances the student’s understanding of their environment and what the expectations are, minimizing the potential for behavior challenges. 3.4. Task structure Specific task structuring is also very beneficial. This is extremely useful in the success of the child with FASD in that task structuring provides a clear system for the child to follow. A task can be structured so that the child understands what task expectations there are, how many tasks need completing, when one task is finished, and what task comes next. In addition, a specific task can be structured in a way that the child can clearly understand the steps of the task. The structure can provide clarity of the beginning, middle, and end of the task. Sometimes an example of the correctly completed task can be useful in this process. In other circumstances, color-coded materials can delineate the first, second, and third step of a task. 3.5. Cognitive control therapy as a potentially useful intervention process for children with FASD Currently our team of researchers in the United States and South Africa is pilot testing school intervention
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modalities for children who have FAS or an FASD diagnosis. The most promising intervention method from our current research is an intervention called Cognitive Control Therapy (Santostefano, 1988). This is a progressive skill-building intervention process that culminates in the child’s ability to understand his own learning style and learning challenges. This metacognitive approach is showing promising results. Before discussing the specifics of the cognitive control therapy paradigm it is important to discuss cognition and how the theory of metacognitive processes fits in with what we are trying to accomplish. From Esquirol (1838) who first made the distinction between mental deficiency and mental illness, to Gardner (1983) who promoted the theory of multiple intelligences by identifying eight intellectual competencies, many theorists have promoted varied models to describe cognition and intellectual ability. Regardless of the theory to which one ascribes, current views assign importance to the notion that intelligence/ cognition is both biological and developmental and is modified by experience. According to Horn (1989) environmental experiences vary among ‘‘individuals in intensity, length, and quality. The different intelligences that emerge thus reflect a variety of neurological, experiential, developmental, genetic, and life achievement influences’’ (Horn, 1989). One intellectual/cognitive theoretical concept that is put forth is that of information-processing (Campione and Brown, 1978). Information-processing theory focuses on the ways individuals create mental representations while receiving input and then how that information is more deeply processed. Information-processing models conceive of human cognition as occurring in a series of discrete stages. Information is received by an individual and then passed on to a higher order stage for further mental processing. The factors of attention, memory span, retention, and speed of information encoding and decoding all play a part in the ability to receive initial input. These are linked to the perceptual skills of individuals and reflect sensory ability and nervous system integrity. Once the information is received, it is then processed more fully using higher order mental processes (executive system). These executive controls refer to environmentally learned factors that guide problem solving such as: (1) knowledge base, (2) schemes, (3) control processes, and (4) metacognition. These interdependent factors include existing knowledge, attention, planning, retrieval of information from long term memory, working memory, assimilating or accommodating new information, and then using strategies such as self-checking and rehearsal to achieve greater generalization of the information (cognitive control processes). Finally, the information is filtered through metacognitive processes. Metacognition involves the ability to have an awareness of one’s own thought processes and strategies. By having this ability, one knows whether a strategy worked or did not work when learning a piece of new information. In this way, metacognitive
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processes allow one to understand how certain cognitive strategies help you or hinder the ability to learn new information (Borkowski, 1985). This tenant of interrelationship between the internal experience and the external environment are at the heart of the cognitive philosophy that Sebastiano Santostefano promotes in his cognitive control model. The origination of the cognitive control concept came from the work of George Klein (Klein, 1953; Klein and Schlesinger, 1949). He attempted to interrelate cognition, affect, and personality. He observed individuals consistently using certain cognitive strategies to approach, avoid, select, compare, and cluster information. He contended that individuals use these cognitive strategies to coordinate information from external reality and from the internal environment of emotions, fantasies, and motives in order to remain in adaptive control of information. This approach adheres to the concept that, from birth, individuals have a number of cognitive controls available to them. Infants are born with an inability to clearly direct their behavior and that behavior proceeds from a state of lack of integration to a more increasing state of differentiation, articulation, and integration. Cognitive controls (patterns of mental processing) are intervening variables by which motor behavior, perception, memory, and other aspects of cognition are organized and eventually coordinated to meet the demands of the individual environment. The metacognitive therapy targets the following five patterns of mental processing (cognitive controls): (1) body ego-tempo regulation—the manner in which an individual represents the body-self and mentally regulates body movements, (2) focal attention—the manner in which an individual scans a field of information, (3) field articulation—the manner in which an individual attends selectively to a particular stimulus while ignoring others; (4) levelingsharpening—the manner in which an individual compares images of past information with perceptions of present information, and (5) equivalence range—the manner in which an individual categorized and conceptualized information. In South Africa, our team has begun to systematically investigate the effectiveness of the use of cognitive control therapy with a cohort of children who are diagnosed with FASD. One hundred and one children identified as either FASD or non-FASD controls are participants in the study. The early results of this intervention are promising. Significant improvements in behavior are being seen after six months of interventions using cognitive control therapy. These behavioral improvements are being measured using the Achenbach (1991). Although premature to determine the full extent of benefits from this intervention method, early results provide hope regarding the use of metacognitive intervention methods with the alcohol-exposed population. 3.6. The role of the family The family of the child is instrumental in defining and guiding the school program for the child with FAS.
Professionals provide valuable expertise toward the development of and educational programs, however, professionals move in and out of a child’s life over the educational career and are financially compensated for their services. Generally, a professional will not follow a child through his life span. Therefore, the professional must recognize and regard the hopes, wishes, and desires families hold for their children with FAS. One good resource to help schools work with families to set long term goals is a educational planning tool created by Michael Giangreco titled choosing outcomes and accommodations for children (COACH) (Giangreco et al., 2000).
4. Conclusion Once those educating and supporting the child with FASD understand the specific learning challenges of each student, appropriate interventions can be developed to help assist the child toward a better educational outcome. Armed with adequate diagnostic and assessment information, a school team can utilize that information to create a positive school program for a child. Two potential intervention methods are described in this paper. The first method involves building external supports into the learning environment using structuring tools and systematic teaching processes. Because these intervention tools are created and tailored to the individual learning needs of each child, it is necessary to assess how well they are working and if the tools need to be adjusted or changed in any way. The second method, cognitive control therapy, is being tested with promising results in a cohort of children in South Africa. The results of the study are showing that utilizing metacognitive processes with affected children may be useful in moderating and mediating their behavior in the school environment. Utilizing these types of interventions with students who have FASD is not static but a dynamic ongoing process. For children with FASD, the school environment can be daunting and difficult to successfully navigate academically and socially. This may make school a negative experience for the child. Helping the child to metacognitively understand his/her learning style and challenges may assist in the child’s ability to moderate his/her own behavior appropriately. Structuring and systematic teaching techniques appropriately tailored to each child can create predictability and understanding for the student and therefore provide a sense of safety and comfort so the child. When children feel that they understand their own strengths and challenges and when children feel comfortable and confident of the environment around them, they will feel more competent and hopefully be inclined to take more learning risks. Enhanced skill development will be the result of increased risk-taking in the learning environment. Increased skill development promotes a more positive sense of self and an enhanced quality of life.
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