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Center for Substance Abuse Prevention (US). Addressing Fetal Alcohol Spectrum Disorders (FASD). Rockville (MD): Substance Abuse and Mental Health Services Administration (US); 2014. (Treatment Improvement Protocol (TIP) Series, No. 58.)

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Addressing Fetal Alcohol Spectrum Disorders (FASD).

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Executive Summary

Introduction

About FASD

Overview

Fetal Alcohol Spectrum Disorders (FASD) is a non-diagnostic umbrella term describing the range of effects that can occur in an individual whose mother consumed alcohol during pregnancy. These effects may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications. As is discussed in greater detail later in this TIP, these disorders often co-occur with substance abuse and mental health issues, and generally require treatment modifications for successful outcomes. They are 100 percent preventable, however, if those at risk of consuming alcohol during pregnancy are identified and effective prevention strategies are used.

Possible diagnoses within the spectrum include Fetal Alcohol Syndrome (FAS), Partial Fetal Alcohol Syndrome (pFAS), Alcohol-Related Neurodevelopmental Disorder (ARND), Static Encephalopathy/Alcohol-Exposed (SE/AE), and Neurobehavioral Disorder/Alcohol Exposed (ND/AE). (See box, FASD: Key Terms, for a fuller description of the disorders within the spectrum and related terminology.)

FASD: Key Terms

  • Fetal Alcohol Spectrum Disorders (FASD): Umbrella term referring to a group of disorders caused by prenatal exposure to alcohol; a particular condition on the fetal alcohol spectrum is referred to as “an FASD.” Now generally considered to refer to Fetal Alcohol Syndrome (FAS), partial FAS (pFAS), Alcohol-Related Neurodevelopmental Disorders (ARND), Static Encephalopathy/Alcohol-Exposed (SE/AE), and Neurobehavioral Disorder/Alcohol Exposed (ND/AE). See below for all. A variety of diagnostic approaches exist for the disorders within the spectrum; the five most commonly used approaches are included in the key terms below, and are summarized/compared in Appendix E.

Disorders currently or previously described as forms of FASD (in alphabetical order):

  • Alcohol-Related Birth Defects (ARBD): Term used to describe individuals who present with congenital defects (including malformations and dysplasia), but not the growth or cognitive/behavioral impairments typically seen in FAS (see definition below). Now less used, although diagnostic guidelines still exist through the Institute of Medicine (IOM; see Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment, below in this box).
  • Alcohol-Related Neurodevelopmental Disorder (ARND): Term created by the IOM to describe individuals with prenatal alcohol exposure and neurodevelopmental abnormalities, but no FAS facial phenotype. The neurodevelopmental abnormalities are characterized by a complex pattern of behavioral or cognitive conditions inconsistent with developmental level and not explained by genetic background or environment. Problems may include learning disabilities; school performance deficits; inadequate impulse control; social perceptual problems; language dysfunction; abstraction difficulties; mathematics deficiencies; and judgment, memory, and attention problems. The term ARND presents with the same limitations as the discontinued term Fetal Alcohol Effects (see definition below), as one cannot confirm that the neurodevelopmental disorder present in a child with prenatal alcohol exposure was caused by the alcohol exposure in the absence of the FAS facial phenotype. Some diagnostic systems replace the term ARND with Static Encephalopathy/Alcohol-Exposed and Neurobehavioral Disorder/Alcohol Exposed (SE/AE and ND/AE; see definitions below).
  • Fetal Alcohol Effects (FAE): Term introduced in the late 1970's to describe less complete partial expressions of FAS (see definition below) in individuals with prenatal alcohol exposure (Clarren & Smith, 1978). Aase, Jones, and Clarren (1995) expressed concern about the validity of the term FAE and proposed abandoning its clinical use, as it implied a causal association (between prenatal alcohol exposure and abnormalities observed in an individual patient) that could not actually be confirmed.
  • Fetal Alcohol Syndrome (FAS): Term for what is generally considered to be the most recognizable form of FASD. These individuals exhibit the FAS facial phenotype, impaired growth, and cognitive and behavioral abnormalities.
  • Neurobehavioral Disorder/Alcohol Exposed (ND/AE): Term used to describe individuals with prenatal alcohol exposure, moderate cognitive/behavioral impairment (equivalent to moderate ARND), and no FAS facial phenotype.
  • Partial FAS (pFAS): Term applied to individuals who exhibit FAS without growth deficiency, or exhibit FAS with most but not all of the facial features.
  • Static Encephalopathy/Alcohol Exposed (SE/AE): Term used to describe individuals with prenatal alcohol exposure and severe cognitive/behavioral impairment (equivalent to severe ARND), but no FAS facial phenotype.

Additional terms are presented in alphabetical order:

  • Alcohol-Exposed Pregnancy (AEP): Any pregnancy during which the woman drinks any amount of alcohol at any time during the pregnancy. This exposure does not mean the offspring has been affected in any way, but it does place the offspring at some degree of risk for an array of developmental difficulties, including damage to the brain and central nervous system, retardation of growth and other physical effects, and cognitive and behavioral impairments.
  • Diagnosis: In the context of this TIP, “diagnosis” refers to the formal identification of an FASD by a qualified team and/or dysmorphologist (someone who specializes in structural, or birth, defects). When the TIP discusses the primary diagnosis that brought the client into your substance abuse or mental health setting, or for which your setting is primarily assessing or treating the client, it will be referred to as the “primary treatment issue.”
  • Diffuse Brain Damage: Damage to the brain that is not localized or necessarily the result of a specific traumatic incident to one part of the brain. Such damage can arise from other sources besides alcohol or occur from multiple sources including alcohol. As an AEP (see definition above) can impair the development of multiple parts of the brain of the fetus over the period of pregnancy, an FASD can be considered a manifestation of diffuse brain damage. However, not all diffuse brain damage is the result of alcohol and its expression does not always qualify as an FASD.
  • FASD 4-Digit Diagnostic Code (Astley, 2004b): Comprehensive, reproducible method for diagnosing the full spectrum of outcomes of patients with prenatal alcohol exposure. First developed in 1997 by the Washington State FAS Diagnostic and Prevention Network (FAS DPN), the Code was revised in 1999 and again in 2004. Summarized in Appendix E.
  • Fetal Alcohol Spectrum Disorder: Canadian Guidelines for Diagnosis (Chudley et al., 2005): Canadian guidelines for the diagnosis of FAS, pFAS, and ARND. Summarized in Appendix E.
  • Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment (Stratton, Howe, Battaglia, & the Committee to Study Fetal Alcohol Syndrome, 1996): Diagnosis and treatment guidelines developed by the IOM and published in 1996. These guidelines would be revised by Hoyme, May, and Kalberg (2005) in A Practical and Clinical Approach to the Diagnosis of Fetal Alcohol Spectrum Disorders: Clarification of the Institute of Medicine Criteria. Each is summarized in Appendix E.
  • Fetal Alcohol Syndrome: Guidelines for Referral and Diagnosis (Bertrand et al., 2004): FAS diagnosis and referral guidelines developed by the Centers for Disease Control and Prevention (CDC). Summarized in Appendix E.
  • Intervention: In the context of this TIP, ‘intervention’ describes 1) a brief methodology for informing women of childbearing age about the results of alcohol screening and the dangers of alcohol use during pregnancy, or 2) the selection of an appropriate treatment methodology to best meet the needs of a client who has or may have an FASD, and any accompanying modifications or accommodations in treatment planning.
  • Screening: ‘Screening’ is a familiar term in mental health and substance abuse treatment settings. Validated screening instruments for identifying alcohol use among women are available, and no modification to the basic understanding of screening is necessary for their use. To accomplish the important goal of screening for an individual with an FASD in your setting, formalized tools are limited. However, this TIP does provide indicators to look for, and screening may need to be done more informally through guided observation and/or diagnostic interviewing. In most cases, screening for an FASD will need to occur over time, rather than being a process that can be completed through the use of a simple, brief instrument administered once (e.g., at intake).
  • Static Encephalopathy: Permanent or unchanging brain damage. Effects on development depend on the part(s) of the brain involved and the severity of the damage.
  • Teratogen: Any substance that can damage a developing fetus. Common teratogens include alcohol, tobacco, lead, radiation, and exposure to infectious disease.

Prevalence

The prevalence of FAS in the United States has been estimated at 1–3 per 1,000 live births among the general population (Stratton et al., 1996) and 10–15 per 1,000 in some higher-risk populations, such as children residing in foster care (Astley, Stachowiak, Clarren, & Clausen, 2002; Astley, 2004a). The prevalence of the full spectrum of FASD in the general population is estimated at 9.1 per 1,000 live births, though a review of in-school screening and diagnosis studies suggest that the national rate could potentially be closer to 50 per 1,000 (May et al., 2009). In addition, recent retrospective analyses of hospital admissions data indicate that under-reporting of alcohol misuse by women may further disguise true prevalence (Morleo et al., 2011).

Although prenatal alcohol exposure has been clearly established as a causal factor for FASD in animal models, the amount of alcohol required to cause damage to the fetus remains in question, and may differ based on the individual. Factors such as dose of alcohol, pattern and timing of exposure, genetics, whether the mother also smoked and/or used other drugs, general health and nutrition of the mother, her level of stress and/or trauma, and her age all may play a role in the impact that alcohol has on the developing fetus (Guerri, Bazinet, & Riley, 2009). Animal studies do suggest that binge drinking (four or more drinks on one occasion) is associated with more severe effects (Bonthius & West, 1988; Clarren, Astley, Gunderson, & Spellman, 1992), and it is generally asserted that there is no known ‘safe’ level of alcohol consumption during pregnancy (Office of the Surgeon General, 2005; Hicks & Tough, 2009; Feldman et al., 2012).

Not every woman who consumes alcohol during pregnancy will give birth to a child with an FASD. However, because science has not determined a safe level of alcohol that may be consumed during pregnancy the possibility of an FASD is created any time a woman consumes alcohol while pregnant.

Due to the range of deficits—and variability in degree of severity of each deficit—within the diffusely damaged brain, FASD can present as functionally different in each individual that is affected. However, certain cognitive, behavioral, and adaptive functioning problems are common across the spectrum, including lower IQ, impaired learning ability, and difficulty processing information (such as not being able to remember or follow instructions, or poor verbal receptive skills) (Streissguth, Barr, & Bookstein, 1996; Bertrand et al., 2004; Streissguth et al., 2004; Astley et al., 2009a; Astley, 2010). Physical abnormalities and facial dysmorphology (i.e., congenital malformation) are only common with FAS. Other functional issues regularly observed include attention deficit (Nanson & Hiscock, 1990; Lee, Mattson, & Riley, 2004), decreased proficiency in cognitive planning (Kodituwakku, Handmaker, Cutler, Weathersby, & Handmaker, 1995; Kodituwakku, Kalberg, & May, 2001; Rasmussen, 2005), reduced working memory (Burden, Jacobson, Sokol, & Jacobson, 2005; Astley et al., 2009b; Green et al., 2009), reduced response inhibition (Noland et al., 2003; Mattson, Crocker, & Nguyen, 2011), socially inappropriate behaviors (Bishop, Gahagan, & Lord, 2007; Jirikowic, Kartin, & Olson, 2008; Mattson, Crocker, & Nguyen, 2011), and deficits in fine motor (Kalberg et al., 2006; Jirikowic et al., 2008) and visual-spatial functions (Chiodo, Janisse, Delaney-Black, Sokol, & Hannigan, 2009; Mattson et al., 2010).

Cost Factors

Estimates of the cost to raise a child with an FASD vary depending on the source and the factors included in the analysis, and detailed cost estimates are generally only available in relation to the specific condition of FAS. Nonetheless, these costs are significant. In an analysis of medical expenditures for pediatric Medicaid enrollees, Amendah, Grosse, and Bertrand (2010) found that, for a child with identified FAS, incurred health costs were nine times higher than for children without an FASD. Astley, Bailey, Talbot, and Clarren (2000a) further isolated cost factors in a demonstration of primary FAS prevention in an FASD diagnostic clinic that targeted high-risk women; using this approach, the cost of raising a child with FAS was found to be roughly 30 times higher than the cost of preventing FAS in the child.

The most widely acknowledged estimate of the lifetime cost of care for an individual with an FAS is that of Lupton, Burd, and Harwood (2004), who adjusted figures originating with Harwood and Napolitano (1985) for 2002 dollars to suggest that the figure was roughly $2 million (including medical treatment, special education, residential care for persons with mental retardation, and productivity losses; in 2012 dollars, this would be over $2.5 million). The overall annual cost of FAS to the U.S. healthcare system (based on an assumption of 2 cases per 1,000 live births) is estimated at $5 billion (Lupton et al., 2004).

Part 3 of this TIP, the online Literature Review, contains additional information on FASD surveillance and cost factors, as well as the impact of alcohol on the brain and behavior.

Historical Background

FASD is often described as a ‘new’ or ‘recent’ discovery. In fact, references to the harmful effects of maternal drinking on infant outcome date back to biblical times: “Behold, thou shalt conceive, and bear a son; and now drink no wine or strong drink” (Judges 13:7, as noted in Clarren & Smith, 1978). In addition, several comprehensive descriptions were compiled by physician groups in the 18th and 19th centuries (Royal College, 1726; Sullivan, 1899; Goodacre & Mercer, 1965). The more recent history commonly referred to begins in 1968, when Lemoine, Harousseau, Borteyni, and Menuet from France published an article describing children with distinctive facial features and other symptoms related to prenatal alcohol exposure. In 1970, unaware of the Lemoine publication, Ulleland and colleagues published similar observations describing a small group of alcohol-exposed infants admitted to several high-risk maternal-child health clinics at the University of Washington (Ulleland, Wennberg, Igo, & Smith, 1970; Ulleland, 1972). This work would eventually lead to a seminal, collaborative article describing the pattern of outcomes associated with prenatal alcohol exposure (Jones, Smith, Ulleland, & Streissguth, 1973), as well as the publication that coined the term FAS (Jones & Smith, 1973).

In the roughly 40 years that have followed, extensive study has been conducted on alcohol's teratogenic effects, as well as on interventions for women of childbearing age who consume alcohol, leading to several significant federal milestones in addressing FASD. In 1996, the Institute of Medicine (IOM) published Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment (Stratton et al., 1996), leading the National Institute on Alcohol Abuse and Alcoholism (NIAAA) to establish the Interagency Coordinating Committee on FASD (originally Interagency Coordinating Committee on FAS) to address that publication's recommendations. Then, in 2000, Congress set forth mandates related to children's health, including FASD, leading the Centers for Disease Control and Prevention (CDC) to establish the National Task Force on FAS and FAE (completed in 2007), and SAMHSA to establish the FASD Center for Excellence in 2001.

In the decade since the Congressional mandates, the research and knowledge base around FASD has expanded greatly. According to Goodlett (2010), a PubMed search of FAS-, FASD-, or fetal alcohol-specific terminology at the end of 2010 returned nearly 3,900 articles published since 1973, of which more than 38 percent had been published since 2000. This growth is translating to practice: Since 2001, the FASD Center for Excellence alone has funded more than 70 subcontractors across the United States to carry out pilot efforts to implement FASD-related services into existing programs, including substance abuse and mental health treatment settings.

This body of work has revealed an unfortunate paradox: Individuals with an FASD require more intensive and personalized services, and early diagnosis and intervention have been identified as critical to improved outcomes and minimized secondary disabilities (Streissguth et al., 2004; Astley, 2010). Yet, individuals with an FASD often go undiagnosed or are misdiagnosed (Greenbaum, Stevens, Nash, Koren, & Rovet, 2009), are difficult to identify early and may not receive appropriate early intervention (Olson, Jirikowic, Kartin, & Astley, 2007), and often receive services that do not account for their disabilities and thus may result in poor outcomes.

Audience: Who Should Read This TIP?

This TIP is designed for use by behavioral health providers, particularly substance abuse and mental health treatment professionals, not only because these are the primary constituencies of SAMHSA but also because individuals with FASD experience higher rates than the general population of both substance abuse and mental health issues (Streissguth et al., 1996; O'Connor et al., 2002; Streissguth et al., 2004; Clark, Lutke, Minnes, & Quellette-Kuntz, 2004; Astley, 2010). In addition, individuals with an FASD exhibit higher rates of life problems commonly encountered in substance abuse and mental health treatment populations, including higher risk of suicide (Huggins, Grant, O'Malley, & Streissguth, 2008), exposure to multiple traumas throughout the lifespan (Henry, Sloane, & Black-Pond, 2007; Greenbaum et al., 2009), homelessness (Fryer, McGee, Matt, Riley, & Mattson, 2007), and increased interaction with the criminal justice system (Streissguth et al., 1996; Streissguth et al., 2004).

This TIP is also important because there are great opportunities for FASD prevention in mental health and substance abuse treatment settings. According to the 2009 National Survey on Drug Use and Health (NSDUH), 17.1 percent of women age 18 or over in the U.S. received mental health treatment or counseling in 2009, compared to only 9.2 of men in the same age group (Center for Behavioral Health Statistics and Quality [CBHSQ], 2010), while the Treatment Episode Data Set (TEDS) indicates that 33.0 percent of admissions to substance abuse treatment facilities in 2011 were female, more than half of whom (50.5 percent) indicated alcohol as a primary, secondary, or tertiary substance of abuse (CBHSQ, 2013). Thus, these settings provide ideal opportunities to implement brief, effective approaches to preventing an AEP.

Part 1 of this TIP is for frontline personnel and consists of three chapters:

  • Chapter 1 discusses approaches to FASD prevention; that is, assisting women who are in treatment settings and are pregnant or may become pregnant to remain abstinent from alcohol. In providing these guidelines, this TIP adopts the IOM model for prevention, which sees prevention as a step along a continuum that also incorporates treatment and maintenance.
  • Chapter 2 discusses methods for identifying individuals in treatment who have or may have an FASD, referring them for diagnosis where possible, and providing appropriate interventions to meet their needs. These clients are assumed to be adolescent or older, as they would need to be capable of presenting in treatment on their own (although the TIP strongly recommends including the family in treatment, when possible).
  • Chapter 3 provides clinical vignettes designed to realistically portray the provider–client interactions that might take place when providing FASD prevention or interventions.

Part 2 provides administrators with strategies and tools for undertaking the activities that will support treatment professionals and clients and for making the changes required to incorporate FASD prevention and/or intervention in daily practice. Part 2 also includes methods, materials, resources, and examples to assist administrators with quality improvement and ongoing evaluation of the necessary programmatic changes.

At the same time, the clinical and administrative guidance set forth in this TIP has strong applicability across healthcare and social service settings. While the client interactions described generally involve substance abuse and mental health treatment, any provider assisting women at risk of an AEP or assisting individuals who may have an FASD can implement the majority of these recommendations if they adapt them for that professional's setting. This is particularly the case if the setting in question overlaps with the life issues that more frequently occur among individuals with an FASD, as discussed above (i.e., criminal justice, housing, primary care).

Barriers to Treatment: The Need for the TIP

For a variety of reasons, including the somewhat hidden nature of many of the symptoms, individuals with an FASD are frequently misdiagnosed or their condition is not recognized (Olson et al., 2007; Greenbaum et al., 2009). This, in turn, leads to care that is not matched to the patient's needs and strengths, increasing the risk for secondary disabilities (Streissguth et al., 2004).

Added to this, recent statistics on drinking among pregnant women show that AEP prevention is as serious an issue as appropriate services for individuals who have an FASD (see box, Drinking Rates Among Pregnant Women, in the next chapter). AEP prevention may not be a familiar goal in mental health and substance abuse treatment settings. Yet these are ideal settings in which to prevent prenatal alcohol exposure, as behavioral health professionals routinely work with women of childbearing age (age 10–49 years). Treatment can then have a positive affect not only on the client, but on his or her family and generations to come.

Ideally, this TIP will help to alleviate many barriers to providing successful treatment for these two populations, including:

  • The application of treatment approaches that, while effective with general populations, may not be ideally suited to the needs of individuals with an FASD;
  • A lack of awareness among treatment professionals of the rapid developments in the field of FASD services over the last decade; and
  • Helping clients deal with feelings of shame, loss, or fear of discrimination.

Lack of Success With Typical Treatment Approaches

Prenatal exposure to alcohol has many teratogenic effects, among them that it can alter brain structure and function, meaning that people with an FASD do not process information in the same ways that those without an FASD do. These effects are permanent; an FASD cannot be ‘cured.’ Processing differences that may affect treatment can take many forms, including:

  • Poor receptive language skills (difficulty with complex language and multiple instructions);
  • Difficulty with social cognition and accurately understanding social cues;
  • Difficulty taking in new information, and in generalizing learning to new settings; and
  • Not always connecting cause and effect (particularly if the effect is delayed).

Expert consensus suggests that treatment approaches that rely on an assumption of ‘normal’ functioning of these cognitive processes are likely to be less effective with individuals with an FASD. This appears to be true for both mental health and substance abuse treatment settings.

Cognitive–Behavioral Therapy (CBT) models, for instance, are verbally based insight therapies designed to reduce target symptoms, and are based on the idea that inaccurate thoughts are linked to maladaptive feelings and behaviors. However, CBT approaches do not fit well given that individuals with an FASD have biologically based cognitive deficits (O'Connor et al., 2002). Behaviors of individuals with an FASD may result from errors in thinking that are difficult to change because of underlying diffuse brain damage. Modification to CBT, and adding other approaches, will be needed to maximize treatment efficiency and success.

The disease model of substance abuse treatment, which advocates lifelong abstinence from alcohol, also relies on the assumption that a client has normative function. Behavioral health professionals assume that the client can comprehend that he or she has a ‘disease’ and also that he or she can plan ahead to recognize why it is important to achieve abstinence. For an individual with an FASD, this link may be difficult to make, and so his or her substance abuse or mental health target symptoms may be harder to change (and change harder to maintain) because of the underlying diffuse brain damage.

Rapid Developments in the Field

The tremendous growth in FASD-related research and the establishment of the SAMHSA FASD Center for Excellence have practical implications for behavioral health professionals, in that the field of FASD-related practices is growing dynamically. Much of the practical guidance in this TIP has emerged only over the last 5 to 10 years. Even professionals who have had some form of FASD training in the past are likely to discover new and useful strategies in this TIP that can be effectively applied in their programs.

Treatment Barriers

Despite their unique treatment needs, clients with an FASD or pregnant women at risk of an AEP still share with any other client a significant, common barrier to treatment success: The impact of negative self-perception. An individual with an FASD or a woman who has consumed alcohol during pregnancy may perceive themselves negatively, either because of internal feelings of shame, a sense of not belonging, or due to experiencing external shaming or judgment. These internal feelings and external experiences can each become a barrier to treatment (Astley, Bailey, Talbot, & Clarren, 2000b; Salmon, 2008).

When implementing the practices recommended in this TIP, behavioral health professionals are urged to keep sight of the importance of addressing the client's feelings and experiences, as well as the need for sensitivity to issues such as gender, ethnicity, cultural background, and sexuality, as these factors impact treatment success among individuals with an FASD and women of childbearing age as significantly as any other treatment population.

“We must move from viewing the individual as failing if s/he does not do well in a program to viewing the program as not providing what the individual needs in order to succeed.”

Dubovsky, 2000

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