FASD: An Overview and Update

FASD: An Overview and Update Building FASD State Systems Meeting Colorado Springs CO May 6, 2008

Dan Dubovsky, MSWFASD SpecialistSAMHSA FASD Center for Excellence 2101 Gaither Rd., Ste 600 Rockville, MD 20850 301-527-6567 dan.dubovsky@ngc.com www.fasdcenter.samhsa.gov 1-866-STOPFAS (866-786-7327)

Fetal Alcohol Spectrum Disorders (FASD) • FASD is a spectrum of disorders • There is a wide range of intellectual capabilities in individuals with FASD • There is a wide range of disabilities due to prenatal alcohol exposure, from mild to severe • There is no way to predict how much alcohol will cause how much damage in any individual • There are many different ways that the disabilities of FASD are manifested • FASD is a descriptive term, not a diagnosis

Fetal Alcohol Spectrum Disorders (FASD) • Behavior often appears to be purposeful • Typical approaches to “difficult” behaviors often don’t work • Many individuals with FASD have other difficulties • One cannot categorically say that all behavior is due to FASD • Prenatal alcohol exposure leading to an FASD causes brain damage • As such, we can begin to understand why individuals with an FASD may have some of the difficulties they exhibit

Diagnostic Terminology Pregnancy Alcohol • Fetal alcohol Syndrome (FAS) • Alcohol-related neurodevelopmental disorder (ARND) • Partial FAS (pFAS) + May result in

Diagnosing Fetal Alcohol SyndromeCDC (July 2004) • Growth problems • Confirmed prenatal or postnatal height or weight or both, at or below the 10th percentile (adjusted for age, sex, gestational age, and race or ethnicity) • Central nervous system abnormalities • Structural • Neurological • Functional • Dysmorphic features • Prenatal maternal alcohol exposure

Diagnosing Fetal Alcohol SyndromeCDC (July 2004) • Dysmorphic features • Short palpebral fissures • At or below the 10th percentile • Smooth philtrum • Thin upper lip (vermillion) Source: Astley, S.J. 2004. Diagnostic Guide for Fetal Alcohol Spectrum Disorders: The 4-Digit Diagnostic Code, Third Edition. Seattle: University of Washington Publication Services, p. 114. Caucasian African American

Diagnosing a Fetal Alcohol Spectrum Disorder Other ThanFAS • There is no consensus on diagnostic terms • There is no consensus for diagnostic criteria for an FASD • Confirmed maternal alcohol exposure generally required but often not available • There are differing opinions as to what is essential for a diagnosis if there are no recognizable facial features • It is generally accepted that those with an FASD without the facial features of FAS make up the majority of those affected by prenatal alcohol exposure

Alcohol’s Effects on the Fetus • Prenatal alcohol exposure can effect multiple systems in the developing fetus • E.g. heart, limbs, kidneys, skeleton • Prenatal alcohol exposure especially targets the developing brain and causes brain damage • Certain structures of the brain seem to be more affected • Effects of FASD last a lifetime • People with an FASD can grow, improve and function well in life • Especially with the proper supports

Recent Animal Studies on AnxietyJoanne Weinberg (2008) • Studies examine how prenatal alcohol exposure and other early nutritional or environmental insults affect neurobiological systems in an animal model and implications for intervention • Altered hormonal, immune, and behavioral function • Special focus on stress

Recent Animal Studies on AnxietyJoanne Weinberg (2008) • Initial findings include: • Maternal alcohol consumption increases HPA (hypothalamic-pituitary-adrenal) activity and alters HPA regulation in the mother and the offspring • HPA is the stress axis • This HPA hyperactivity is observed under baseline conditions and following exposure to stress • HPA may be a common pathway for early adverse life experiences • Interventions targeted to normalizing the HPA axis may provide a novel approach to interventions

Benefits of Preventing FASD • FASD is a birth defect that is 100% preventable • If no woman consumed any alcohol during her entire pregnancy, no child would be born with an FASD • It is very costly to raise a person with an FASD • Estimates by Lupton, Harwood, et al are that it costs $2,000,000.00 over a lifetime to care for one individual with FAS • There are no estimates for the overall costs of care for FASD

Importance of Preventing FASD: Facts to Consider • Prenatal alcohol exposure can result in brain damage • Fetal alcohol spectrum disorders are lifelong disorders • There is no cure for an FASD • FASD affects individuals, families, communities, and States • FASD is often a “hidden” disability • The range of FASD is more common than disorders such as Autism and Down Syndrome

Importance of Preventing FASD: Facts to Consider • There is no known safe amount of alcohol to use during pregnancy • There is no known safe time to drink during pregnancy • Most women do not know when they become pregnant • The only proven safe amount of alcohol to drink during pregnancy is none • Fetal alcohol spectrum disorders can occur in any community where women drink

Who is at Risk of Giving Birth to a Child with an FASD? • Women with co-occurring disorders • Families with a history of multigenerational alcohol use • Women who have experienced stressors that increase the risk of alcohol use or abuse • Women who have an FASD • Women who have given birth to a child with an FASD • The highest risk group • All women of childbearing age who drink

Alcohol and Women • All alcoholic beverages are harmful to the fetus. It does not matter what form the alcohol comes in • E.g., wine spritzers, alcohol pops, beer, wine, mixed drinks • A drink  a drink  a drink • All beer does not have the same alcohol content • Typical mixed drinks often have more than one serving of alcohol • Kaskutas and Graves (2001) studied alcohol consumption in 321 pregnant women • When self selecting drinks, the size of the drinks was up to 307% greater than standard measures

How Much Alcohol Causes Damage? • There is no way to predict how much alcohol will cause how much damage in any one individual • People absorb and metabolize alcohol differently • The ability of the liver to process alcohol has an effect • Genetics has an effect • The presence or absence of certain gene pairs • Age of mother • Parity (number of previous children) • Co-occurring issues e.g., tobacco use, other substance use; nutrition

How Much Alcohol Causes Damage? • Binge drinking (>4 drinks for women) appears to especially impact the fetus • Charness et al (1994) found that cell adhesion molecules are inhibited even at exposure to low concentrations of ethanol in animal studies • These have effects on processes that effect the developing brain

How Much Alcohol Causes Damage? • Day et al (2002) found a significant weight difference in children at 14 years born of mothers who drank in light, moderate, or heavy amounts during pregnancy compared to those who were abstinent • Growth and head circumference deficits were found to have a dose-response relation • Clinical significance of these deficits is not yet apparent

How Much Alcohol Causes Damage? • Sood et al (2001) found that a child’s behavior was adversely affected even at levels of alcohol consumption as low as one drink per week • Children exposed to any level of prenatal alcohol exposure were found to have 3 times the odds of showing delinquent behavior

Incidence • Incidence in the general population of an FASD is thought to be about 1 in 100 in the U.S. • With better incidence studies, we will most likely find a higher incidence of FASD • A recent study in Italy found an incidence of between 1 in 25 and 1 in 50 in first grade children • The incidence of an FASD in foster care populations is likely much higher • One study found that over 80% of children and adolescents with an FASD were in foster or adoptive homes

Consequences of Not Recognizing FASD in an Individual • These individuals often fail with typical education, parenting, treatment, justice, vocational, and housing approaches • They often look “normal” • They tend to be very verbal • They say they know what they need to do and don’t follow through • They frequently have average or above average intelligence

Consequences of Not Recognizing FASD in an Individual • They have often lived in multiple living arrangements • Birth homes, kinship care, foster care, adoptive homes • We utilize typical approaches, such as the notion that the only way people learn is to experience the consequences of their behavior • If we utilize this concept, we put the person with an FASD at high risk of ending up homeless, in jail, or dead • At 18 (or before), they are on their own without the supports necessary to succeed in the community • The person is then at risk of being homeless, in jail, or dead

Consequences of Not Recognizing FASD in an Individual • Adults are often repeatedly in treatment settings having “failed” in treatment • Multiple admissions for substance abuse treatment • Especially individuals who do better in inpatient settings • Multiple admissions for mental health treatment • Especially those with poor follow up • They repeatedly have difficulty in employment • They get into repeated trouble with the law • Especially for committing the same crime more than once and/or repeatedly breaking probation or parole • They are frequently homeless

Why We Might Miss an FASD in a Family Member • Our focus is on their children • We give them a list of instructions or tell them what they need to do • Multiple instructions is difficult for someone with an FASD • We ask if they understand and if they have any questions • They reply that they understand and have no questions • They say that they know what they need to do and we take that at face value • If there is an FASD, later they may not recall what they need to do or what the instructions mean

Issues in Accurately Diagnosing an FASD • If there is a co-occurring FASD with other disorders, the treatment will need to be different • Due to differences in processing information • If the wrong diagnosis is given, the wrong treatments may be prescribed • If an FASD is not recognized, expectations may not be appropriate, thus setting the person up to fail • If the person continues to fail and doesn’t know why, s/he may develop a self image of just being “bad” • The only way to get mental health services for the person is to have a DSM Axis I or Axis II diagnosis

Language Issues in FASD • Often verbal and therefore appear to be intact • Very literal in their thinking and interpretation • Verbal receptive language is more impaired than verbal expressive language • A person with an FASD may be able to talk a good game but not be able to process or use all of what they hear • They will often do what they think they need to based on the pieces that they have processed • This frequently looks like purposeful oppositional or uncooperative behavior • Verbal receptive language is the basis of most of our interactions with people

Difficulties with Literal Thinking • Do “exactly” as told • Difficulty with recognizing the consequences of actions • Difficulty with the sense of time • Difficulty with a sense of space • Difficulty in level, point, or other reward systems • Difficulty managing money • Difficulty with sarcasm, joking, similes, metaphors, proverbs, idiomatic expressions

Situations That Rely on Verbal Receptive Language Processing • Parenting techniques • Elementary and secondary education • Child welfare • Judicial system • Treatment • Motivational interviewing • Cognitive behavioral therapy • Group therapy • AA/NA groups • Awareness campaigns

A Strengths Based Approach to Improving Outcomes • Identify strengths and desires in the individual • What do they do well? • What do they like to do? • What are their best qualities? • What are your funniest experiences with them? • Identify strengths in the family • Identify strengths in the providers • Identify strengths in the community • Include cultural strengths in the community

Friendly Likeable Verbal Helpful Caring Hard worker Determined Have points of insight Good with younger children* Not malicious Every day is a new day Strengths of Persons With an FASD D. Dubovsky, Drexel University College of Medicine (1999)

How Outcomes Can Be Improved by Recognizing FASD • The individual can be recognized as having a disability • Recognizing and providing appropriate interventions for women with an FASD is a key prevention approach • Providing proper support for family members with an FASD can reduce out of home placements • Frustration and anger of providers and families can be reduced by seeing behavior as due to brain damage • Approaches can be adjusted to meet the needs of the individual and the family • Diagnoses can be questioned

How Outcomes Can Be Improved by Recognizing FASD • We can ask the right questions • E.g., someone who is literal may answer no to drinking alcohol but yes to drinking martinis, wine, or beer • Multiple admissions for treatment can be reduced if brain differences are recognized • Long term success can be increased by providing the proper transition and supports • The quality of life for the individual with an FASD, the family, and the community can be dramatically improved • The sense of accomplishment by providers can be increased resulting in a more positive attitude

Person First Language • “He’s a child with FAS” not “he’s an FAS kid” • A person affected by prenatal alcohol exposure, not “the affected person” • A mother with FAS, not “an FAS mom” • “She has mental retardation” not “she is mentally retarded” • “He has a mental illness” not “he is mentally ill” • “He has schizophrenia” not “he is a schizophrenic” • No one “is” FAS although a person may have FAS

“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 Paradigm Shift

Final Thoughts to Keep in Mind • Flexibility and creativity are essential in addressing FASD • Identifying and supporting strengths and validating accomplishments is essential • Our goal is to help people succeed • Positive outcomes for the person means positive outcomes for agencies and systems • We want people to become interdependent • They need a sense of safety in order to do that • Ask “what does this person need in order to succeed and how can we provide that for him or her”

Final Thoughts to Keep in Mind • The spectrum of FASD are much more common than many other disorders such as Autism • The incidence in systems of care is significantly higher • Most individuals with an FASD will not be diagnosed • Correctly recognizing and addressing FASD (in terms of prevention and treatment) can reduce long term costs • It costs a minimum of $2 million to raise one individual with FAS • Correctly identifying and addressing FASD can improve outcomes for individuals, families, agencies, and systems

Final Thoughts to Keep in Mind • When an intervention does not work, it is essential to examine why it is not working that individual at that time • We must determine what we can do to ensure that the person succeeds • It is impossible to work successfully in most settings without having a firm working knowledge of FASD • Ongoing training and supervision is essential to success • FASD is a human issue

FASD Is a Human Issue • FASD is about people; do not lose sight of that • FASD affects the lives of individuals, families, and communities • It’s essential to “really care” • People with an FASD and their families have great potential • We need reminders of what has been accomplished • Especially when things are not going well • Always remember that addressing FASD can be a matter of life or death • What you do concerning this issue can save lives! • Remember the starfish story

Thoughts to Keep in Mind for Today and the Future “This is not the end. It is not even the beginning of the end, but it is, perhaps, the end of the beginning.” • Winston Churchill

FASD: An Overview and Update