People with Fetal Alcohol Spectrum Disorder (FASD) have a variety of pervasive physical, structural, neuropsychological, and behavioral abnormalities that create lifelong challenges. The purpose of this paper is to describe the history, diagnosis, prevalence rates, and effects of and interventions for people with FASD. Common difficulties experienced by people with FASD are poor: executive functioning, memory, sense of time, math skills, and communication. They usually are slow paced, rigid, immature, and impulsive. They tend to have sensory overload and environmental sponginess (taking on others’ moods and values). Effective interventions are ones that have a positive valence and include repetition, structure, and practice delivered by a group of people that act as the person’s “external brain” throughout the person’s lifespan.
The Learning and Memory Challenges of People with FASD
And Interventions to Cope With These Challenges
People with Fetal Alcohol Spectrum Disorder (FASD) have a variety of pervasive physical, structural, neuropsychological, and behavioral abnormalities that create lifelong challenges for themselves, their families, communities, and countries (with regard to medical, psychological, and educational resources needed to help them achieve their full potential) (Conry, Cook, Loock, Rosales & LeBlanc, 2005). The purpose of this paper is to first explore when FASD became recognized. Afterwards, diagnosis, prevalence rates, and primary and secondary effects will be described. Finally, interventions that can assist people with FASD will be explained.
The Greeks and Romans started hypothesizing about the teratogenic effects of alcohol on a developing fetus (Abel, 1999) although no known systematic observations were recorded that could support these hypotheses. Indications of FASD can even be seen in ancient legends such as the story of Oedipus, in which Oedipus impulsively, aggressively, and unwittingly kills his biological father and marries his biological mother thus showing some of the symptoms of FASD (Abel, 2005). Perhaps not so surprisingly, Sophocles’s play (Oedipus) was typically presented during the “Festival of Drunkenness” (Abel).
In the 1700s in England, physicians described children of alcoholic mothers as feeble-minded, distempered, and shriveled (Hoyme, May, Lalberg, Kodituwakku, Gossage, & Trujillo, 2005). In 1899, it was observed that babies born to mothers who were incarcerated throughout pregnancy were less likely to be born with defects than criminally oriented women who were not incarcerated (thus, the incarcerated women were more likely to be abstinent) (Hoyme et al., 2005). In 1957, Rouquette observed an association between small infants born to drinking mothers (as cited in Krulewitch, 2005).
In 1968, researchers in France documented physical and behavioral abnormities observed in over 100 infants born to women known to have drank alcohol during pregnancy (Hoyme et al., 2005). In 1973, Jones, Smith, Ulleland, & Streissguth wrote the first diagnostic criteria for the term they coined “Fetal Alcohol Syndrome” (Hoyme et al.). Since then, a multitude of observational studies on humans and experimental animal studies have been conducted to further elucidate the teratogenic effects of alcohol on a developing fetus. In 1980, the first public awareness campaigns began to warn women to not drink alcohol while pregnant (Krulewitch, 2005). It was not until 1996, that researchers began to study the effects of lower levels of alcohol consumption and binge drinking on fetus development and the need for diagnosis of FASD emerged (Krulewitch).
An early diagnosis is important to mobilize resources and interventions that will assist people with FASD as soon as possible in order to attempt to prevent secondary effects of FASD (such as mental health issues, problems in school, and socialization difficulties) (Loock, Conry, Cook, Chudley, & Rosales, 2005). As with other diagnoses, severity ranges from a few mild effects to severe neurological effects such as deafness, blindness and severe mental retardation (Chudley, Conry, Cook, Loock, Rosales, & LeBlanc, 2005). The Institute of Medicine first developed diagnostic criteria for FASD in 1996, although some researchers felt these criteria were too vague (i.e. Hoyme et al, 2005). To address this concern, Astley and Clarren (2000) developed a set of criteria based on their observations of over 1000 children in Washington State whose mothers drank during pregnancy. However, some researchers found these criteria too confusing and impractical for regular use (Hoyme et al., 2005). Taking these issues into consideration, Chudley et al. (2005) developed Canadian guidelines for the diagnosis of FASD after 211 consultations with 102 Canadian and American experts in the field of FASD.
Chudley et al. (2005) and Wattendorf and Muenke (2005) recommended that because of the pervasive effects of in-utero alcohol on the fetus, diagnosis of FASD requires multi-disciplinary teams consisting of professionals such as neuropsychologists, occupational therapists, speech/language pathologists, dysmorphologists/clinical geneticists, developmental pediatricians, and educational specialists. When diagnosing FASD, it is important to consider family and genetic history as many disorders share similar traits with FASD (Hoyme et al., 2005). For example, Dubowitz syndrome shares the symptoms of growth deficiency, low IQ, small head, and small eye openings with FASD (Chudley et al.). Cornelia De Lange syndrome shares the symptoms of growth deficiency, low IQ, long philtrum (the groove between the middle of the nose and upper lip) and thin upper lip with people who have FASD (Chudley et al., 2005). Children with Williams Syndrome also share some facial features with children with FASD, in addition to a “cocktail party” personality (i.e. people who like to talk a lot) (Hoyme et al., 2005). Children of mothers with phenylketonuria share the features of small eye openings, poorly formed philtrum, thin upper lip and small head with children that have FASD (Chudley et al.)
After ruling out other possible disorders, Chudley et al. (2005) suggest a physical and neurological exam that includes measurements of growth, head size, and other abnormalities. Chudley et al. suggest the following criteria should be used to assess FASD:
1) Growth deficiency according to at least one of the following:
a) Birth weight or length below the 11th percentile of that child’s race and gender,
b) Weight or height at any childhood age below 11th percentile for the child’s race,
c) Weight/height ratio below 11th percentile for the child’s race.
2) All three of the following at any age, although they tend to be more pronounced during childhood:
a) Eye openings 2 or more standard deviations (SD) below the norm for the child’s race,
b) Rank of 4 or 5 on the philtrum (groove between nose and lip) guide for person’s race: The philtrum guide is five pictures illustrating varying degrees of distinctiveness, starting at a clearly defined philtrum (1) to a virtually absent philtrum (5).
c) Rank of 4 or 5 on the upper lip thinness scale: this scale ascends from a full lip (1) to an almost absent upper lip (5).
3) Abnormalities in three or more of the following central nervous system functions:
a) Brain structures, (see below)
b) Cognitive functions such as abstract reasoning, attention, hyperactivity, organization, impulse control, self-regulation, information processing problems: inability to sort, plan, organize and retrieve information, flexibility,
c) Language/communication, difficulty recognizing body language,
d) School related abilities such as educational achievement and social skills.
Furthermore, Chudley et al. (2005) suggest that the criteria for partial fetal alcohol syndrome should be the presence of two out of the three criteria under section two above, section three as stated above, and confirmation that the mother imbibed alcohol during pregnancy.
Almost every part of the brain can be damaged by the teratogenic effects of maternal alcohol use (Caley, Kramer, & Robinson, 2005). Caley et al. note the following areas:
a) Corpus callosum: connects brain’s hemispheres,
b) Hippocampus: part of the limbic system which plays an important role in emotion and memory,
c) Basal Ganglia: involved in movement and thought processes,
d) Cerebellum: plays a role in posture, balance, and coordination,
e) Diencephalon: Septal area: involved in the limbic system which plays a role in emotion; Thalamus: involved in communication and sends information to cerebral cortex (which can also be damaged); Hypothalamus: maintains homeostasis of the body through chemical and sensory messages.
In addition to the above symptoms, people with FASD tend to have a higher incidence of congenital heart defects, cleft lip or palate, problems with kidneys, liver, hernias, seizures, attention deficit hyperactivity disorder (ADHD), bone malformations, skin folds covering the inner corners of the eyes, crooked and malformed teeth, unusual hair patterns, abnormal hands, skin lesions (Caley et al., 2005; Chudley et al., 2005; Hoyme et al., 2005) and various vision abnormalities (Stromland, 2004).
With regard to vision abnormalities, one mother of a child with FASD who had vision problems stated, “Our daughter had trouble with eye contact ….we discovered she had double vision within about 30 inches of her face. If people got within that distance, they developed four eyes and two overlapping noses” (Kulp, 2004, p. 169). This mother noted that many people ascribed psychological meanings to the child’s behavior until these vision problems were discovered (Kulp).
An example of bone malformation is a curved and shortened fifth finger (Wattendorf & Muenke, 2005). Many people with FASD also have “hockey stick” hands, which is a wide crease in their palms that starts below the second finger and that looks like a hockey stick. “Railroad track” ears, which are ears that are flattened on the top and have a double crease, are common observations of people with FASD (Hoyme et al, 2005). Some people with FASD also have upturned noses (Wattendorf & Muenke, 2005).
In addition, people with FASD tend to have a higher incidence of psychological/psychiatric disorders such as anxiety, mood, and explosive disorders (O’Malley & Nanson, 2002). Fetuses of alcoholic mothers are also more likely to suffer from malnutrition, trauma from falls (Caley et al.) effects of smoking, higher maternal age, and other drug use such as cocaine and heroin (Chudley et al, 2005).
Estimates vary regarding prevalence rates of FASD and FAE (Fetal Alcohol Effects) in Canada. Researchers observing people in Saskatchewan, Canada, found that approximately .05% of live births in Saskatoon were babies born with confirmed maternal Fetal Alcohol Exposure (Szlemko, Wood, & Thurman, 2006). Szlemko, Wood, and Thurman found there was a higher incidence of maternal alcohol consumption among Aboriginal populations compared with other ethnic groups, that natives living in northern Canada were more likely to abuse alcohol than those living in southern parts of Canada, and that Native males were twice as likely to abuse alcohol than Native women. The researchers from Saskatchewan suggested that approximately 0.25% of babies were born with the full spectrum disorder but without confirmation of maternal alcohol consumption (Kyskan & Moore, 2005). Estimates from American data suggest a range of prevalence rates between 0.1% to 0.3% of live births (Abel, 2006; Caley, Kramer, & Robinson, 2005).
Abel (2006) noted that the United States has one of the lowest alcohol consumption rates in the world and about 20 times the incidence of FAS than any other industrialized country with higher alcohol use. For example, approximately 48% of women in Spain, Switzerland, Germany and Italy reported drinking alcohol during pregnancy and their incidence of FASD is almost non existent (Abel). Abel found that the determining factors of whether babies were born with FASD was not whether women drank alcohol during pregnancy but rather the total quantity, frequency, and quantity drank during each incident. Abel noted that approximately 48% of pregnant European mothers stated they drank small amounts of alcohol (i.e. a glass of wine per day) almost everyday with no measured effects on the fetus, whereas the American women were more likely to have drank the same amount of total alcohol during the pregnancy, except all at once on one or two days per week rather than daily. Abel notes that pregnant women who periodically binge (five or more drinks on one occasion) throughout pregnancy are more likely to have babies with facial abnormalities and cognitive challenges than women who drink the same amount of alcohol over a week.
Children whose mothers quit or reduced alcohol consumption during the second or third trimester of pregnancy had less impairment than children whose mothers drank throughout the pregnancy (Korkman, Kettunen, & Autti-Ramo, 2003). Mothers who drank alcohol during the days and weeks following conception, when many women are unaware they are pregnant, tend to have babies born with head and face abnormalities although eye abnormalities were more often observed in babies whose mothers binge drank (5 or more drinks in 2 hours or less) throughout the pregnancy (Krulewitch, 2005). Women who drank heavily (14 or more ounces of alcohol per day) throughout most of the pregnancy tend to give birth to children who have small brains, severe intellectual and behavioral deficits and higher incidence of seizures (Krulewitch). Growth stunting due to alcohol exposure usually occurs in the last two trimesters although some stunting may occur in the first trimester as well (Krulewitch). It is currently not possible to identify critical periods for behavioral problems (Krulewitch).
Furthermore, mothers who give birth to babies with FASD usually have a myriad of other health issues such as cirrhosis, gastrointestinal bleeding, anemia and other effects of poor nutrition due to heavy chronic alcohol abuse (Abel, 2006). Abel notes that FASD is not usually found in women who are in the early stages of alcoholism, but 43% of chronic and compulsive drinking women gave birth to babies with FASD.
However, heavy alcohol use is not the only factor contributing to FASD (Abel, 2006). Other common predictors of fetal damage are smoking and poverty (Abel). Most alcoholic women smoke cigarettes and are very poor (Abel). Abel notes that poverty and ethnicity can not be separated as babies born to mothers of low socioeconomic status predicts FASD and not ethnicity. The reason poverty is an important factor is that poor women tend to engage in poor nutritional habits (i.e. they eat empty calories), are usually exposed to environmental pollutants (such as lead) due to living in poor neighborhoods situated by factories, have high psychological stress, and tend to smoke and use other drugs (Abel). Smoking is highly correlated with poverty and is also teratogenic due to nicotine and carbon monoxide that impedes circulation and oxygenation (Abel).
Abel (2006) notes that although it is prudent to not imbibe alcohol during pregnancy, there is no empirical evidence for abstinence as evidenced by the almost 50% of European women who imbibe small amounts of alcohol every day during pregnancy with no measurable detrimental effects. Abel states that a threshold of five drinks imbibed over a two hour period on only one occasion can adversely affect the fetus and there is no empirical evidence for lesser amounts having teratogenic effects. In sum, it is generally concluded that it is the mother’s blood alcohol level at a given time and the frequency in which she had high blood alcohol levels during pregnancy that determines whether the fetus will have FASD (Abel, 2006; Krulewitch 2005).
Animal researchers have found that a single and large exposure of alcohol to a developing fetus in mid to late pregnancy can cause neurons in the fetus’s brain to “commit suicide,” especially during the last trimester of pregnancy (Olney, 2004, p.137). During this last trimester, the brain usually goes through a growth spurt (Olney). During a severe bout of intoxication, regions in the brain can experience a 45-68% cell loss due to neuron suicide and other forms of cell death (Olney).
Although attention to maternal alcohol consumption during pregnancy has been the main focus of research for obvious reasons, paternal influences have also been examined. It is firstly interesting to note that 75% of children with FASD have a biological father who was alcoholic (Krulewitch, 2005). In experimental research with animals, it has been found that alcohol adversely affects sperms (Abel, 2004). In a literature review of paternal contribution to FASD, Abel noted that paternal alcohol consumption is associated with lower birth weight, heart defects, hyperactivity, and lower IQ. For example, experimental animal research has found that rats injected with alcohol more often sired “runts” (offspring born at a birth weight of two or more standard deviations below average) and malformed offspring than sober rats (Abel). In addition, offspring of animals that were treated with alcohol for many weeks prior to copulation were more likely to produce offspring with larger adrenal glands, smaller spleens, lower testosterone levels several weeks after birth, higher susceptibility to bacterial infection, and hyperactivity (Abel). Offspring of alcohol treated males and females showed a poorer response to stress than offspring of females that did not have this paternal contribution (Abel). Much research has been conducted to determine reasons why alcohol affects sperm and preliminary research suggests that one mechanism could be the alteration of the sperms’ DNA (Abel).
Effects of FASD
Primary effects of in-utero alcohol exposure are pervasive physical and neurological deficits that affect children throughout their lifespans (Malbin, 2002). There are ten primary areas in which researchers have found that people with FASD tend to experience difficulty, which are as follows:
1) Executive Functioning: people with FASD tend to have poor executive functioning, which is expressed as difficulty planning, organizing, prioritizing, setting goals, and following a routine (Malbin, 2002).
2) Memory: People with FASD tend to experience difficulty in all stages of Information Processing (input, integration, processing, retrieval, and output) (Wattendorf & Muenke, 2005). They have difficulty remembering and therefore learning from past experience (Wattendorf & Meunke). They also have problems with abstracting such as understanding consequences (Wattendorf & Meunke). For example, a child with FASD stated to her mother “I didn’t know that I could get cut if I punched the window” (Kulp, 2004, p. 129). The child was angry that someone stole her money; after punching the window, she called the police (Kulp, 2004). Furthermore, people with FASD tend to have difficulty connecting causal variables (Krulewitch, 2005). For instance, a child with FASD stated to his mother “What do you mean I broke the window? I didn’t break the window, the ball broke it” (Kulp, 2004, p. 122).
Also, people with FASD tend to have problems generalizing information from one setting to another (Burd, Selfridge, Klug, & Bakko, 2004). A good example of this difficulty is the following conversation a mother had with her child who had FASD. The child stated, “’I was supposed to go bowling after school. I was swearing, so I didn’t get to go bowling on Thursday.’ I asked him if he’d learned anything from that. He replied, ‘Yeah, I shouldn’t swear on Thursdays’” (Kulp, 2004, p.122). Another example is a mother who told her son he could not rent an R rated movie. To comply with her direction, he did not rent the movie; he bought it instead thinking that that was not disobeying his mother (Kulp, 2004).
Planning for the future is also very difficult or impossible for people with FASD, probably due to the abstract thinking ability this planning would entail (Malbin, 2002). Additionally, difficulty in remembering leads to repeating the same mistake or the same criminal offence over and over again, and being surprised by the same outcomes (Burd, Selfridge, Klug, & Bakko, 2004). They also have inconsistent memories in that they may remember and do well on one day but then have difficulty doing the same behavior on another day due to retrieval problems (Malbin).
3) Time, math and money: People with FASD tend to lack an “internal clock” and therefore tend to have no sense of time (Malbin, 2004). For example, telling someone to come back in ten minutes is useless information as they can not sense the passage of time (Malbin, 2004), therefore it is important to provide a given clock time (i.e. come back at 2:15). In addition, they tend to have great difficulties with math, science, and money (Ryan & Ferguson, 2006). In many cases, due to severe memory deficits and impulsivity, budgeting must be done for them as they have difficulty understanding where their money went, how much money they need for essential living expenses, and regular or automatic payments. (Ryan & Ferguson, 2006).
4) Judgment: Many people with FASD have great difficulty making decisions possibly partly due to brain disorganization (Malbin, 2004). They tend to not have fear of dangerous situations and therefore can not make decisions about whether a situation would be safe or dangerous (Malbin). Furthermore, they have difficulty distinguishing between strangers and friends (Malbin). They also often confuse reality with fantasy (Malbin).
5) Communication: People with FASD tend to have pervasive communication difficulties (Malbin). They may have learned the social skills to nod and say “yes” but then fail to follow up as they did not understand (Kulp, 2002). For example, they may be sent to their locker to get a book, but by the time they get there, they forget to retrieve the book, then they go back to the classroom empty handed (Kulp). When the teacher asks them if they understand, they nod to say “yes”, yet they do not understand (Kulp). When the teacher asks them “why” questions (“Why didn’t you get that book?), they do not understand how things connect and become confused (Kulp).
People with FASD tend to have good expressive skills in that they usually create a lot of verbal output, yet do not understand a lot of what they are saying (Korkman, Kettunen & Autti-Ramo, 2003). For instance, many of these people can recite rules and consequences but then are unable to apply them because they can not comprehend what the words mean, may not have the memory to retrieve them when needed, may not have the reasoning ability to apply them when needed, and cannot generalize them to other situations (Devries & Waller, 2004). Thus, when they recite rules and break them, many teachers and correctional officers (when these people are incarcerated) believe they know the rules and are breaking them purposely (Devries & Waller, 2004). In general, people with FASD have little difficulty expressing words, and great difficulty understanding the words’ meanings, comprehending how words connect to behavior and consequences, and understanding the subtleties involved in words’ connotations (Devries & Waller, 2004). This discord between expression and action leads many to believe they are higher functioning than they really are, and that their level of understanding is higher than actual levels (Devries & Waller, 2004).
6) Slow pace: People with FASD often think slowly, process auditory information slowly and take minutes rather than seconds to produce responses (Malbin, 2002). Many times they will state “I don’t know” just to reduce the pressure of having to answer right away (Malbin).
7) Rigidity: Often people with FASD have problems changing activities as making transitions are extremely difficult for them (Ryan & Ferguson, 2006). For example, instructions such as put away your math book and get ready for the gym class is very difficult for them as they become “stuck” in the previous activity (Ryan & Ferguson).
8) Immature: People with severe FASD tend to be stuck developmentally at approximately half their chronological age (Ryan & Ferguson, 2006). However, they can be immature at different levels depending on area of functioning (Devries & Waller, 2004). For example, they may be chronologically at age 20, socially at age 15, and cognitively at age 10 (Devries & Waller). Throughout their lifespans, people with FASD tend to display childlike innocence due to cognitive deficits (Devries & Waller).
9) Impulsive: Because of problems planning, remembering, connecting events etc, people with FASD tend to act impulsively, then see the problem after they have engaged in the behavior, but then do it again and again because they can not remember previous experiences (Malbin, 2002). Their need for immediate gratification also seems to be greatly exaggerated (Devries & Waller, 2004).
10) Overwhelms easily: People with FASD usually become overwhelmed by sensory input and are unable to filter out extraneous details (Malbin, 2002). Due to stimulus overload, they may become irritable, aggressive, and or depressed (Malbin). Counterintuitively, they may not be affected by huge crises, but minor disagreements, inconveniences, and misunderstandings may provoke a response others find greatly disproportionate to the situation (Devries & Waller, 2004). These people also tend to either be over-reactive or under-reactive to physical sensations (Devries & Waller). For example, an over-reactive child could not handle using coloring books with low grade newsprint as the sensation of the rough paper caused sensory overload (Kulp, 2004). Many of these people with under-reactions do not attend to or report medical issues such as earaches, broken bones, or other sources of pain (Malbin).
11) Environmental “Sponginess” is a term this writer uses when discussing people with FASD as they tend to take on the mood and values of whomever they associate with, thus making them susceptible to being easily misled (and with the right support people, being easily led in the right direction). Devries and Waller (2004) refer to it as being a “moral chameleon” as they state these people “…can easily blend into the group values of a street gang, as well as they can with the values of their peers at church, and not even be conscious of the difference” (p.121). This environmental sponginess is a problem when questioned by police as many people with FASD will agree to leading questions and want to please interviewers thus leading to false confessions (Fast & Conry, 2004).
As can be seen above, people with FASD suffer from many direct, primary effects of the brain malformations and malfunctioning that pervade all facets of information processing. As a result, they also experience secondary effects. For example, 44% of people with FASD experience at least one bout of major depression during adolescence or adulthood, and 40% of people with FASD experience psychosis in their lifetimes (Olney, 2004). Results from the University of Washington database of over 1100 people with FASD found that approximately half of them had made at least one suicide attempt in their lifetime (O’Malley, 2005). Burd et al. (2004) found that 90% of people with FASD have had mental health problems (i.e. depression, anxiety), 60% did not finish high school, 60% got in trouble with the law, 50% had been confined in a treatment or correctional institution, 50% had engaged in inappropriate sexual behavior, and 30% had drug or alcohol abuse issues. Furthermore, it is important to note that Fast and Conry (2004) found that 73% of children with FASD experienced abuse and/or neglect during their formative years, thus exacerbating the primary effects and promoting the secondary effects of FASD. In order to prevent these secondary effects and mediate the primary effects, effective interventions need to be employed.
In general, interventions for people with FASD can be challenging as traditional interventions are often not effective (Malbin, 2002). For example, people with FASD tend to respond poorly to traditional behavioral interventions that teach cause and effect, learning new behaviors, and generalizing behaviors to other situations as these abstract concepts tends to confuse them (Devries & Waller, 2004). Furthermore, many of these people use services from helping professionals and experience much success as a result (Malbin). As is traditional in the helping services, after much success has been experienced, services are then withdrawn in an attempt to encourage independence (Devries & Waller, 2004). However, after services have been withdrawn, chaos and crises usually ensues (Devries & Waller).
Many people with FASD break the law and require interventions to prevent recidivism (Nelson, Taylor, & Wark, 2006). It is estimated that approximately 50% of the inmate population in Federal and provincial prison are people who have FASD or have been exposed to alcohol pre-natally (Nelson, Taylor, & Wark). The purpose of sentencing in Canada is to denounce the crime, teach consequences, deter, and rehabilitate (Fast & Conry, 2004). However, these lofty goals escape people with FASD and the more effective interventions are ones that provide support and change to their living and social environments (Fast & Conry).
Another challenge in working with people with FASD, who also have ADHD or other medical conditions requiring medication, is that they tend to have a different response to medication than those who do not have FASD (O’Malley & Nanson, 2002). Because people with FASD and ADHD tend to suffer from several brain malformations that cause disruption of brain neurochemistry these people tend to react unpredictably to medication (O’Malley & Nanson).
The most important feature of successful interventions for people with FASD is having a social circle of helpers that provide intensive support throughout their lifespan (Nelson, Taylor & Wark, 2006). This support becomes their “external brain” for making decisions, judgment, organization, prioritizing, budgeting etc. (Nelson et al.; Ory, 2006). Nelson et al. found that 83% of people with FASD can not live independently. Helping professionals should “Look for successful acceptance of and dependence on external structure” not independence (Ory, p.56).
Important main features of successful interventions are repetition, structure and practice (Duquette, Stodel, Fullerton & Hagglund, 2006; Ryan & Ferguson, 2006). Structure refers to “Doing the same thing, in the same order, in the same way, with the same cues and prompts and the same expectations” (Ory, 2006, p.57). This structure gives the affected person an “anchor” so that they do not get lost in ambiguity (Ory).
Furthermore, successful interventions involve a positive focus (Wilton & Plane, 2006). For example, helping professionals need to build on clients’ strengths rather than focus on deficits, promote health rather than focus on illness, and think of them and their families as partners in change rather than users of services (Wilton & Plane).
The goal of interventions is to set the person up for success (Ory, 2006). The following is a list of specific interventions gathered from the literature:
a) When speaking with people who have severe FASD, people need to speak slowly and clearly, say exactly what they mean in as concrete of terms as possible, give them a lot of time to answer questions and review concepts several times over several days and in every situation it applies (Harpur, 2001; Miller & Herpel, 2006).
b) Set expectations that are congruent with the age in which the person operates, not the chronological age (Malbin, 2002). Helping professionals need to lower expectations and consider how much the person can accomplish (Ory, 2006).
c) Due to sensory overload, helping professionals need to alter the environment to as calming a place as possible, such as replacing buzzing and flickering lights, having calm versus bright lights and colors, and removing things that can easily cause distraction such moving objects (wind chimes outside the window etc.) (Malbin, 2002)
d) Rather than punishing people for doing things wrong that they can not understand, adjust the environment to provide the person with successful experiences (Ory, 2006). For example, if a person leaves a purse unattended in a room with a person with FASD, the person with FASD may not connect the purse with its owner and therefore think they found the purse (Kulp, 2004). Punishing the person for stealing the purse is futile as the person can not understand that an unattended purse belongs to someone else. Instead, remove opportunities in the environment that would cause such confusion and build on strengths instead (i.e. do not leave unattended objects around a person with FASD) (Ory).
e) Because people with FASD are easily fatigued, slow down and reduce work load and take many breaks (Miller, 2006).
f) Due to difficulty abstracting and thinking concretely, effective interventions should be concrete, kinesthetic, and experiential (Malbin, 2002).
e) Due to difficulty being rigid and stopping tasks, helping professionals working with people with FASD need to adjust workload and provide a lot of warning when tasks need to end (Ryan, 2006).
f) To address an inability to control impulses, it is helpful to interrupt the person with FASD in the middle of an act and give a cue such as “stop, think, press your lips together” (so they do not say things in the heat of the moment) (Kulp, 2004). This intervention is effective as it breaks the chain between the impulse and action, which is difficult for them to do independently (Kulp, 2004). Engaging in cost benefit analyses with people who have FASD is usually futile: they can not keep a goal in mind while developing pros and cons, they have difficulty understanding consequences, and they are very unlikely to remember the outcome of the analysis in an applicable situation, and they can not generalize one situation to another situation (Ory, 2006).
In summary, successful interventions are those that involve an “external brain” throughout the lifespan. People that form the external brain need to speak in slow, clear, concrete language, set expectations congruent with functional level, change the environment, work slowly on a reduced workload with many breaks, use concrete, kinesthetic, and experiential teaching tools, provide a lot of notice prior to changing tasks, and interrupt impulses.
In conclusion, people with FASD have pervasive and lifelong physical, structural, neuropsychological, and behavioral abnormalities. Physical abnormalities include low birth weights, much shorter height than other people of the same race, face abnormalities, and damaged brain structures. This brain damage forms the basis of many other challenges such as problems with executive functioning, memory, sense of time, ability to understand math and money, judgment, communication, slow auditory processing, rigidity, immaturity, impulsiveness, tendency to overwhelm easily, and environmental “sponginess” (taking on the mood and values of people around them). To address these challenges, many interventions have been found to be effective. Successful interventions are those that involve support throughout the lifespan and involve adjusting rate and type of instruction, setting realistic expectations, adjusting the environment, reducing workload, providing notice prior to changing tasks, and interrupting impulses.
Abel, E.L. (2004). Paternal contribution to fetal alcohol syndrome. Addiction Biology, 9,
169-176. Retrieved from Ebsco database.
Abel, E.L. (2005). Did Oedipus have fetal alcohol syndrome disorder? Mankind
Quarterly, 469, 71-80. Retrieved from Ebsco database.
Abel, E.L. (2006). Fetal alcohol syndrome: A cautionary note. Current Pharmaceutical
Design, 12, 1521-1529. Retrieved from Ebsco database.
Burd, Selfridge, R.H., Klug, M.G., & Bakko, S.A. (2004). Fetal alcohol syndrome in the
US corrections system. Addiction Biology, 9, 169-176. Retrieved from Ebsco database.
Caley, L.M., Kramer, C., & Robinson, L.K. (2005). Fetal alcohol spectrum disorder. The
Journal of School Nursing, 21, 139-148. Retrieved from Ebsco
Chudley, A.E., Conry, J., Cook, J.L., Loock, C., Rosales, T., & LeBlanc, N. (2005). Fetal
alcohol spectrum disorder: Canadian guidelines for diagnosis. Canadian Medical
Association Journal, 172, 1-21. Retrieved from Ebsco database.
Devries, J., & Waller, A. (2004). Fetal alcohol syndrome through the eyes of parents.
Addiction Biology, 9, 119-126. Retrieved from Ebsco database.
Duquette, C., Stodel, e., Fullarton, S., & Hagglund, K. (2006). Teaching students with
developmental disabilities. Council for Exceptional Children, 39, 28-31.
Retrieved from Ebsco database.
Fast, D.K., & Conry, J. (2004). The challenge of fetal alcohol syndrome in the criminal
legal system. Addiction Biology, 9, 161-166. Retrieved from Ebsco
Harpur, L. (2001). FASD teens in the classroom: Basic strategies. Guidance &
Counselling, 17, 1-6. Retrieved from Ebsco database
Hoyme, H.E., May, P.A., Lalberg, W.O., Kodituwakku, P., Goassage, P., Trujillo, P.M.
(2005). A practical clinical approach to diagnosis of fetal alcohol spectrum
disorders: Clarification of the 1996 Institute of Medicine criteria. Pediatrics, 115,
39-49. Retrieved from Ebsco database.
Korkman, M., Kettunen, S., & Autti-Ramo, H. (2003). Neurocognitive impairment in
early adolescence following prenatal alcohol exposure of varying duration. Child
Neuropsychology, 9,117-128. Retrieved from Ebsco database
Krulewitch, C.J. (2005). Alcohol consumption during pregnancy. Annual Review of
Nursing Research, 23, 101-134. Retrieved from Ebsco database.
Kulp, J. (2004). Our FAScinating journey. Brooklyn Park, MN: Better Endings New
Kyskan, C.E., & Moore, T.E. (2005). Global perspectives on fetal alcohol syndrome:
assessing practices, policies, and campaigns in four English-speaking countries.
Canadian Psychology, 46, 153-165. Retrieved from Ebsco
Loock, C., Conry, J., Cook, J., Chudley, A., Rosales, T. (2005). Identifying fetal alcohol
spectrum disorder in primary care. Canadian Medical Association Journal, 172,
628-630. Retrieved from Ebsco database.
Malbin, D. (2002). Trying differently rather than harder. Portland, OR: Tectrice.
Miller, D. (2006). Students with Fetal Alcohol Syndrome: Updating our knowledge,
improving their programs. Council for Exceptional Children, 38, 12-18. Retrieved
from Ebsco database.
Miller, D., & Herpel, M. (2006). Designing behavior intervention plans for students with
FAS: Programming considerations and strategies. Behavior Intervention Plans,
13- 18. Retrieved from Ebsco database.
Nelson, B., Taylor, H., & Wark, D. (2006, May). Strategies for FASD. Paper presented at
the Second National Biennial Conference, Late Adolescents and Adults with
FASD Conference, Vancouver, BC, Canada.
Olney, J.W. (2004). Fetal alcohol syndrome Fetal alcohol syndrome at the cellular level.
Addiction Biology, 9, 137-149. Retrieved from Ebsco database.
O’Malley, K.D. (2005).Adults with fetal alcohol spectrum disorder. Canadian
Journal of Psychiatry, 50, 125-126. Retrieved from Ebsco database
O’Malley, K.D., & Nanson, J. (2002). Clinical implications of a link between fetal
alcohol spectrum disorder and attention-deficit hyperactivity disorder. Canadian
Journal of Psychiatry, 47, 349-355. Retrieved June 12, 2007 from Ebsco database
Ory, N. (2006, May). Providing intrusive support to people with impulsive behaviour,
stuck behaviour and poor self-regulation of arousal. Paper presented at the Second
National Biennial Conference, Late Adolescents and Adults with FASD
Conference, Vancouver, BC, Canada.
Ryan, S. & Ferguson, D.L. (2006). On, yet under, the radar: Students with fetal alcohol
syndrome disorder. Exceptional Children, 72, 363-376. Retrieved from Ebsco database.
Stromland, K. (2004). Visual impairment and ocular abnormalities in children with fetal
alcohol syndrome, Addiction Biology, 9, 153-157. Retrieved from Ebsco database.
Szlemko, W.J., wood, J.W., & Thurman, P. (2006). Native Americans and alcohol: Past,
present and future, The Journal of General Psychology, 133, 435-451. Retrieved
from Ebsco database.
Wattendorf, D.J., Maj, M.C., & Muenkie, M. (2005). Fetal alcohol spectrum disorder.
American Family Physician, 72, 279-287. Retrieved from Ebsco
Wilton, G., & Plane, M.B. (2006). The family empowerment network: A service model to
address the needs of children and families affected by fetal alcohol spectrum
disorders. Pediatric Nursing, 32, 299-305. Retrieved from Ebsco