FASD Prism: Community, Wellness, and Belonging Nancy Whitney Letha Fernandez

EDUCATIONAL OBJECTIVES Identify characteristics of individuals with FASD Importance of identifying and modifying approaches to meet their individual neurodiversity Be able to develop a treatment plan for a person with an FASD

Fetal Alcohol Spectrum Disorders (FASD) Umbrella term describing a range of lifelong effects that can occur in a person whose mother drank alcohol during pregnancy. Not a medical diagnosis. The brain is the organ typically affected; it can be damaged even in the absence of facial or other physical characteristics. Fetal alcohol spectrum disorders (FASD): The term “FASD” indicates that there are a variety of effects of prenatal alcohol exposure. FASD is not a diagnosis. Although the various fetal alcohol spectrum disorders are permanent conditions, specific symptoms may be treatable or manageable. Thus, the definition notes possible lifelong implications, depending on the specific nature of the disorder and the individual affected. Canada uses the singular term “fetal alcohol spectrum disorder,” and the United States uses the plural “disorders.” However, both view FASD as a descriptive term and not a diagnostic term. This definition of FASD was agreed on in April 2004 by a group of national experts representing the Centers for Disease Control and Prevention (CDC); the National Institute on Alcohol Abuse and Alcoholism (NIAAA); the Substance Abuse and Mental Health Services Administration (SAMHSA); Health Canada; and the fields of research, psychiatry, and justice. The meeting was facilitated by the National Organization on Fetal Alcohol Syndrome (NOFAS). 3

FASD: FETAL ALCOHOL SPECTRUM DISORDER Fetal Alcohol Syndrome (FAS): A medical diagnosis that represents the most severe damage caused by Prenatal Alcohol Exposure (PAE) Fetal Alcohol Effects (FAE): The individual has the cognitive impairments and even some of the physical presentation but the face characteristics do not meet criteria for the full diagnosis of FAS

Fetal Alcohol Syndrome (FAS) A specific, permanent birth defect caused by maternal alcohol use during pregnancy. A medical diagnosis: Q86.0 in the International Classification of Diseases (ICD-10). 3 distinguishing features: growth, face, CNS damage along with prenatal alcohol exposure The leading preventable cause of intellectual disabilities in the Western world. 5

Terminology: What Are the Other Types of FASD? Partial FAS is a diagnostic classification for patients who present with: most, but not all, of the growth deficiency and/or facial features of FAS. central nervous system damage (structural, neurological, and/or functional impairment). Static encephalopathy (alcohol exposed). This diagnostic classification is for patients who present with central nervous system damage (structural, neurological, and/or significant functional abnormalities) and prenatal alcohol exposure. Neurobehavioral Disorder (alcohol exposed) is a classification for patients who present with central nervous system dysfunction (mild functional impairment with no evidence of structural or neurological abnormalities) and prenatal alcohol exposure . Alcohol-Related Neurodevelopmental Disorder (ARND): People with ARND might have intellectual disabilities and problems with behavior and learning. They might do poorly in school and have difficulties with math, memory, attention, judgment, and poor impulse control. Alcohol-Related Birth Defects (ARBD): People with ARBD might have problems with the heart, kidneys, or bones, or with hearing. They might have a mix of these.

Teratogens Substances that have the potential to damage the fetus when exposure occurs during pregnancy (e.g., radiation, thalidomide, alcohol). Degree of damage depends on timing and dose of exposure. If timing and dose are below the teratogenic threshold, exposure may not cause malformation. 7

Impact of Other Substances on Pregnancy and Fetal Development Increased risk of miscarriage or stillbirth. Increased risk of premature birth and/or low birth weight. May have minor impacts on attention and specific functions such as visual motor integration. Withdrawal from substances after birth, such as cocaine or nicotine. Neonatal Abstinence Syndrome (NAS), when newborns withdraw from opiates.

And Consider Alcohol: It’s the Worst Alcohol is a consistent and clear teratogen. It is the only substance of abuse associated with a clear syndrome and lifelong birth defect (FAS), and a spectrum of neurodevelopmental disabilities, complex learning and behavioral difficulties (FASD). 9

PREVALENCE OF FASD Each year in the United States, an estimated 40,000 babies are born with an FASD, making these disorders more common than new diagnoses of autism spectrum disorder (Centers for Disease Control and Prevention, 2010), and a leading preventable cause of intellectual disabilities (Abel & Sokol, 1987). Recent in-school studies suggest that cases of FASD among live births in the U.S., previously reported as approximately 9 per 1,000 (Sampson et al., 1997) could, in reality, be closer to 50 per 1,000 (May, 2009). From SAMSHA FASD Center of Excellence

We’re Missing a lot of Kids Researchers collected data between 2010 and 2016 on 6,639 children in four communities in the Midwest, Rocky Mountain, Southeast and Pacific Southwest At each site, first-graders in public and private schools were recruited across two academic years and evaluated based on the FASD criteria. Prenatal alcohol exposure was assessed by interviewing mothers or other close relatives. The estimated prevalence of FASD was higher—ranging from 3.1 to 9.8 percent among the study sites. Of the 222 children diagnosed with FASD in the study, only two had been previously diagnosed with FASD, although many parents and guardians were aware of the children’s learning and behavioral challenges. This finding suggests that children with FASD often go undiagnosed or misdiagnosed. May, P.A., et al. Prevalence of Fetal Alcohol Spectrum Disorders in 4 US Communities. JAMA. Online February 6, 2018.

Central Nervous System Dysfunction Growth Deficiency Specific Pattern of Facial Anomalies FAS Central Nervous System Dysfunction Organic Brain Damage Poor coordination Hyperactive behavior Difficulty with attention Poor memory Difficulty in school (especially with math) Learning disabilities Speech and language delays Intellectual disability or low IQ Poor reasoning and judgment skills Sleep and sucking problems as a baby Vision or hearing problems

Central Nervous System Dysfunction FASD Central Nervous System Dysfunction Organic Brain Damage Poor coordination Hyperactive behavior Difficulty with attention Poor memory Difficulty in school (especially with math) Learning disabilities Speech and language delays Intellectual disability or low IQ Poor reasoning and judgment skills Sleep and sucking problems as a baby Vision or hearing problems 14 14

Figure 1 Vulnerability of the fetus to defects during different periods of development. The blue portion of the bars represents the most sensitive periods of development, during which alcohol-induced (i.e., teratogenic) effects on the sites listed would result in major structural abnormalities in the child. The lt blue portion of the bars represents periods of development during which physiological defects and minor structural abnormalities would occur. SOURCE: Adapted from Moore and Persaud 1993. Jacobson, S. (1997). Assessing the impact of maternal drinking during and after pregnancy. Alcohol Health Res World 21(3): 199-203.

PAE and the Brain: “Diffuse brain damage” Teratogenic effects of alcohol are widespread, affecting almost the entire brain. Review of MRI studies found: reduced brain volume, shape & thickness changes in corpus callosum; malformations throughout multiple brain regions. High variability. New studies link cognition to underlying brain structure. Lebel, Roussotte, & Sowell (2011). Neuropsychol Rev, 21(2): 102–118.

Signs a baby may have FASD Small at birth Problems sucking or swallowing- failure to thrive Fussy- crying or trembling Low muscle tone Easily startled and it doesn’t get better Trouble sleeping Under or over reaction to pain, cold or touch Prone to illness or infection

How Does Prenatal Alcohol Exposure Impact the Individual? Poor Executive Functioning- trouble with decision-making, and problem-solving, poor judgement, lack of cognitive flexibility Communication difficulties- trouble understanding what people say or being able to say what they mean. Poor Sensory Integration- gets over-stimulated in groups, uncomfortable with clothe, such as tags or seams; easily distracted; emotional outbursts Poor memory- can’t remember what people say, appointments, tasks. Can forget even after previous successes. Concrete thinking- has trouble with abstract concepts such as time, money, social cues

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Why There is a Higher Prevlance of FASD in High-Risk Populations

PREVALENCE OF SECONDARY DISABILITIES Across the Life Span 100 90 80 70 60 50 40 30 20 10 Ages 6 - 51 Ages 21 - 51 % Originally slide 1 Mental Health Problems Disrupted School Experience Trouble With the Law Confinement Inappropriate Sexual Behavior Alcohol & Drug Problems Dependent Living Problems with Employment Ages 6-51 (n=408-415) Ages 21-51 (n=89-90)

United States FAS: 0.5 to 2 per 1000 live births (depends on ascertainment methods) FASD: 50 per 1000 live births (or up to 5% of all births) FASD is more common than Muscular Dystrophy, Cystic Fibrosis, Downs Syndrome and Spina Bifida combined. U.S. Child Psychiatry population: FASD: 5 per 100 Youth with an FASD are 19 times more likely to be incarcerated than youth without an FASD. Can J Public Health. 2011 Sep-Oct;102(5):336-40. FASD is 10-15 times more prevalent in the foster care system than in the general population. Ann Streissguth, Attaining Human Rights, Civil Rights, and Criminal Justice for People with Fetal Alcohol Syndrome, TASH NEWSLETTER, September 1998 73-80% of children with full-blown FAS are in foster or adoptive placement. Burd, 2001; May, Hymbaugh, Aase, & Samet, 1983; Streissguth, Clarren, & Jones, 1985. Studies by May et al., (1983) and Streissguth et al., (1985)

People with FASD are at Risk for Developing Substance Abuse Problems Streissguth (1996): 46% of adults (N=90) and 29% of adolescents (N=163) with FAS or FASD have a substance abuse problem or received treatment. vs. Population-based studies: 18.2% adult lifetime rate of alcohol use disorders and 10.3% adult lifetime rate of drug use disorders.

Why Screen? To help you… Understand the nature of the brain damage that characterizes FASD Modify therapeutic approaches accordingly

The Life History Screen: A 28-item tool with promising results Grant, et al. (2013). Int J Alcohol Drug Res, 2(3), 37-49.

Categories: * Key Life History Domains Childhood History* Maternal Alcohol Use* Education Criminal History Substance Use Employment Mental Health Living Situations Day-to-Day Behaviors* * Key Life History Domains

People with FASD are at Risk for Developing Substance Abuse Problems Streissguth (1996): 46% of adults (N=90) and 29% of adolescents (N=163) with FAS or FASD have a substance abuse problem or received treatment. vs. Population-based studies: 18.2% adult lifetime rate of alcohol use disorders and 10.3% adult lifetime rate of drug use disorders.

Basics of Motivational Interviewing: Goals- Insight? Modification to MI for ID disabilities Paper pencil Visual reminders

Circle and Fence: To help a person with FASD identify and remember who is a safe person and who is not.  “Who is safe and helpful to you and who is not so good for you?”

Providing Mentoring and Education for Individuals with FASD

Incorporating Mentoring or Peer Support for Increasing Success in the Daily Life.

Remember: People with FASD learn best by the behavior modeled by those around them.

Using positive feedback and rewards for goal setting and treatment planning. -If you say ‘don’t’ than have add ‘do…’

Discussion of diagnostic services and support services in the community.

Paradigm Shift “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 This paradigm shift is very important. Most of the time, service providers use a program that works with many people, as shown by experience or research. If the person does well in the program, the program is viewed as successful. If the person does not do well (by the program’s standards), the person is seen as failing or as unmotivated. Service providers and caregivers need to change this mindset. It is their responsibility to identify methods to ensure that the person succeeds (in the individually developed definition of success for the person).

Small groups- 10 min- develop a treatment plan for a hard serve client you work with (probable FASD)

Resources University of Washington Fetal Alcohol and Drug Unit: (Research) www.depts.washington.edu/fadu University of Washington FAS Diagnostic and Prevention Network www.depts.washington.edu/fasdpn Centers for Disease Control and Prevention www.cdc.gov/ncbdd/fasd Collaborative Initiative on Fetal Alcohol Spectrum Disorders www.cifsd.org FASD Center for Excellence www.fasdcenter.samsha.gov National Organization on Fetal Alcohol Syndrome www.nofas.org FASLink www.faslink.org 41