What is FASD?
Fetal Alcohol Spectrum Disorders (FASD) describes a continuum of permanent birth defects caused by maternal consumption of alcohol during pregnancy.
FASD includes, but is not limited to the following medical diagnoses:
- Fetal Alcohol Syndrome (FAS)
- Partial Fetal Alcohol Syndrome (pFAS)
- Alcohol-Related Neurodevelopmental Disorder (ARND)
- Alcohol-Related Birth Defects (ARBD)
- Fetal Alcohol Effect (FAE)
The term Fetal Alcohol Spectrum Disorders is not in itself a clinical diagnosis but describes the full range of disabilities that may result from prenatal alcohol exposure. Currently, FAS is the only expression of prenatal alcohol exposure that is defined by the International Statistical Classification of Diseases and Related Health Problems and assigned ICD-9 and ICD-10 diagnoses.
There is no known safe amount of alcohol or safe time to drink alcohol during pregnancy. Because of this, the current recommendation of both the Surgeon General of the United States and the British Department of Health is to drink no alcohol at all if one is pregnant or planning to become pregnant.
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FASD Facts
To be diagnosed with fetal alcohol syndrome (FAS), a child would meet all of the following criteria:
- Growth deficiency.
- A unique cluster of minor facial anomalies, such as small eyes, smooth philtrum (the vertical groove above the lips) and a thin upper lip.
- Central nervous system damage, including structural (damage to the physical structure of the brain), neurological (damage to the normal operation of the brain and nervous system), and/or functional (behavioral) impairment.
- Record of prenatal alcohol exposure.
When the child has the classic facial anomalies, the other symptoms and signs are usually present and significant, and the child is diagnosed with fetal alcohol syndrome.
When the characteristic facial anomalies are not present, the other characteristics can still be present and profound. That is when the terminology can get confusing and it may be hard to diagnose the cause of the child’s problems. Prenatal alcohol exposure can cause behavioral, cognitive, and psychological problems. Signs and symptoms of an FASD are similar to some mental illnesses. In many cases, the signs and symptoms of an FASD go unrecognized or are misdiagnosed as a mental illness or brain injury. Individuals with an FASD may also receive multiple diagnoses, such as attention deficit/hyperactivity disorder (ADHD), oppositional defiant disorder (ODD), and anxiety disorder.
Therefore, it is important to determine whether the symptoms are a result of prenatal alcohol exposure or have another root cause.
Deciding if a child has FAS or a related fetal alcohol spectrum disorder (FASD) condition takes several steps. There is no one test to diagnose FAS or FASD, and many other disorders can have similar symptoms. Only trained professionals can diagnose a disorder from the FASD spectrum. Ideally, diagnosis is done by a team that may include:
- Geneticists
- Developmental pediatricians
- Neurologists
- Dysmorphologists (physicians specializing in birth defects)
- Education consultants
- Psychologists, psychiatrists, and social workers
- Occupational therapists
- Speech and language specialists
Physical conditions associated with FASD are generally seen at or soon after birth. Many of the visible signs of FAS (see Diagnosis tab) are subtle. Many persons who were exposed to alcohol prenatally do not have physical signs or conditions associated with certain types of FASD. (See Helpful Sites below for information about physical conditions associated with FASD.)
This page discusses behavioral symptoms of FASD, because almost all individuals affected with FASD have some degree of behavioral challenges.
“Almost without exception, children with FAS fall in the mentally handicapped range in terms of adaptive behavior, no matter how bright they are intellectually.”
Peggy Lasser, FAS Support Network, 1999
The behavioral effects of FASD fall into two categories: primary behaviors, which are the direct result of the damage incurred by the brain prenatally, and secondary behaviors which arise as a result of an environment that consistently does not meet the needs of the affected individual.
Note: On this page, FASD behaviors are described in negative terms. We do this so parents and caregivers can explain the behavior of their loved one with FASD to a professional helper (physician, teacher, probation officer, case manager, vocational rehabilitation specialist, et al.) who may be part of a service team. See the sub-page below; it describes the common strengths of persons with FASD. It provides an alternate way to view typical FASD behavior. It can be very helpful, such as when discussing your FASD-affected child with a spouse or partner, arranging a play date, or when talking about FASD with your affected loved one. |
Primary Behavior Symptoms of FASD
Primary behaviors include:
- Difficulty with executive functioning tasks, including planning, organizing, prioritizing, setting goals, and sticking to a schedule.
- Problems with memory and difficulty learning from past experiences. Many persons with FASD have trouble consistently applying what has been learned, and applying it in a new setting.
- Impaired judgement and an inability to make decisions. Persons affected by FASD tend toward impulsiveness.
- Concrete thinkers. People with FASD have difficulty with abstract thinking, including forming links and associations and generalizing concepts.
- Communication and language challenges: the FASD-affected individual appears to understand what others are saying, but is unable to comprehend. He or she has difficulty responding appropriately to questions.
- Slow cognitive and auditory pace: language is processed more slowly, requiring more time to comprehend and respond.
- Resistance to change and may have difficulty switching gears.
- Dysmaturity: developmental age may be significantly younger than chronological age. Dysmaturity describes a level of functioning (social, emotional, and cognitive) that is younger than an individual‟s chronological age. It differs from immaturity in that immaturity implies the potential to catch up with chronological age, while dysmaturity is a chronic condition.
- Over-reaction to stimuli, which may result in increased agitation, irritability, and/or aggression.
Secondary Behavior Symptoms of FASD
Secondary behaviors or disabilities include:
- Inappropriate humor; class clown.
- Pseudo-sophistication; may echo words, phrases, manners, and dress in order to „pass‟ as competent beyond their actual ability, often to their detriment.
- Fatigued, irritable, resistant, argumentative.
- Anxious, fearful, chronically overwhelmed.
- Frustrated, angry, aggressive, destructive.
- Poor self-concept, often masked by unrealistic goals or self-aggrandizement.
- Isolated, few friends, picked-on.
- Family or school problems including fighting, suspension, or expulsion. May run away, have other forms of avoidance.
- Trouble with the law, addictions.
- Depressed, may be self-destructive, suicidal.
- Inappropriate sexual behaviors.
“Soft Signs” of FASD
The following are characteristics that many parents and caregivers of persons with FASD report observing in the person’s behavior: Teresa Kellerman calls these “soft signs” of FASD
- Immature social/emotional development: friends are younger, shunned by peers of same age, overly friendly to strangers, no long-term healthy “best friend.”
- Emotional lability: can’t hide feelings, roller-coaster emotions, feelings are “out there.”
- Poorly developed conscience: the teen or adult with FASD seems to have the conscience development of a 6-year-old, lacks mature altruism, is rather self-centered, lies to cover up mistakes, takes what isn’t theirs but doesn’t consider it “stealing.”
- Lack of consistent impulse control: sometimes can control impulse, sometimes cannot, more likely to control impulse in presence of an authority figure, sometimes there is a gap between thought and action.
- Inability to learn from consequences: knows the rules, understands cause and effect, doesn’t make the connection at the time of action, or doesn’t remember the rules or consequences, or thinks “This time I might not get caught.”
- Good expressive language skills: he or she can talk the talk, but can’t walk the walk, their verbal skills are much better than their writing skills, good articulation masks poor comprehension.
- Artistic: likely to have some unusual talent, even with poor fine motor skills, may be good artist, or excel in music, or be good in mechanics.
- Attention and short-term memory deficits: not always hyperactive, but cannot stay focused, are easily distracted by external stimuli, can remember events from past but not rules from yesterday. Makes friends easily but has a hard time remembering their names.
- Inappropriate social interactions: stands too close, stares, interrupts, forgets manners, cannot act as a true friend, cannot keep confidences, shares personal information, inappropriate sexual behavior.
- Difficulty managing money: spends paycheck or allowance right away, cannot plan or carry through with a monthly budget, cannot distinguish the value of $5,000 vs $500,000, makes extravagant purchases beyond means.
- Poor concept of time: difficulty keeping appointments, lives in the moment, forgets what happened yesterday; cannot plan well for the future.
- Grandiose ideas that they cannot attain: unrealistic life goals, unrealistic self-image, distorted view of themselves and the world.
- Poor judgment: difficulty making wise decisions, lack of common sense, inability to accurately assess risk factors.
- Would rather avoid discipline or punishment than “own up” to responsibility; will “re-frame reality” (lie or shift blame onto others) to avoid blame; or, with passage of time, may forget what actually happened or who did what.
- Vulnerability and naiveté: easily influenced or manipulated by others, impressionable, follows unhealthy leaders, cannot easily distinguish truth from lies, trusts without merit, may confess to crimes not committed. Cannot easily distinguish friends from strangers, or people who cannot be trusted from those who can.
- Has a genuinely detached or innocent attitude about the predicaments they get themselves and their families into, often making the same mistakes over and over again.
Behavior Symptoms of FASD at Different Ages
Many web sites addressing FASD describe typical symptoms at different ages. Below are several that we have found to be especially useful.
A Developmental Overview from Parents’ Perspectives
Infants and Toddlers
Toddlers & Preschoolers
Children
Children Ages 6-11
Adolescents
Adolescents Ages 12-17, page 1
Adolescents Ages 12-17, page 2
Adults (18+)
Useful Links
MedicineNet Signs & Symptoms of FASD
FASD Symptoms on Buzzle.com
Children with FAS – A Psychological Profile
Executive Functioning, A PDF of a slide presentation discussing the kinds of deficits in this area that are characteristic of alcohol-related brain damage. May be useful in working with a clinician, teacher or others in describing the individual’s adaptive function challenges.
Downloads
1. MYTH: You can tell if someone has FASD by the way they look.
Most people with FASD have no physical characteristics of the disability. Research shows that there is a small period during a pregnancy when alcohol use can affect the child’s facial features. This is very unlike the brain, which develops throughout the entire pregnancy and can therefore be affected at any point.
2. MYTH: FASD only affects children and adolescents. Adults don’t have it.
Although the majority of resources and information about FASD are directed to persons under 18, FASD is a permanent, lifelong disability. Rather than being able to “outgrow” FASD, many adults face greater challenges as they get older because their behavior becomes less acceptable as adults. As a person ages, the FASD-related facial features they may have can become less apparent, making it even harder for people to receive a proper diagnosis.
3. MYTH: Children with FASD will outgrow it.
There is no known cure, and FASD does not go away over time. The characteristic facial and physical features that some children have may become less noticeable as they age and mature. But while the specific characteristics and challenges of FASD may change as the individuals age, those with FASD require a lifetime of supports.
4. MYTH: FASD is just the latest “trendy” disability.
Although there have always been people affected by FASD (it has been observed and documented in Biblical and Greek and Roman times), only since 1973 recently have we been able to accurately diagnose and recognize the enormous prevalence of this developmental delay. FASD is frequently misdiagnosed as one of its secondary characteristics (for example, as Oppositional Defiance Disorder or as Attention Deficit/Hyperactivity Disorder). FASD has been routinely absent from criminal justice discourse, despite the high prevalence of people with FASD in conflict with the law.
5. MYTH: FASD is a Native American condition (or a condition only children of alcoholics get). Only American Indians (or only children of alcoholic women) have FASD.
Some people believe that FASD is only an issue for certain populations. This is untrue. Women of all different backgrounds, ethnicities and income levels drink alcohol. FASD is solely and directly the result of prenatal exposure to alcohol. Therefore, FASD can affect people of all races, ages, cultures, children of well educated women and children of poorly educated women, and urban, suburban, and rural persons. People with FASD include males and females, lesbian women, gay men, bisexual men and women, and transgender persons. It affects persons who are ablebodied, and it affects persons with other disabilities, including autism spectrum disorders, seizure disorders, cerebral palsy, multiple sclerosis, muscular dystrophy, hearing impairments, vision impairments, learning disorders, etc.
6. MYTH: There is no benefit in receiving a diagnosis of FASD. This diagnosis will brand the individual who received it for life.
Rather than labeling, a diagnosis provides an understanding of how to best support a child. A large part of the diagnostic process includes developing strategies and interventions, specifically designed for the unique needs of the child and the family, to help the child learn and succeed. A diagnosis may provide access to additional community supports and services. Research has also shown that receiving a diagnosis may mitigate, or help reduce, the development of subsequent secondary disabilities such as unemployment, mental health problems, trouble with the law, inappropriate sexual behavior, and disrupted school experience (Streissguth, Kanter et al. 1997). Many individuals who have received a diagnosis express relief in discovering that there is a medical reason why they often struggle more than their peers, and that it isn’t their fault or from lack of trying. This has helped many to develop a more positive self image.
7. MYTH: Diagnoses of pFAS and ARND aren’t as serious as FAS.
Although individuals with pFAS (partial FAS) and ARND (Alcohol Related Neurological Disorder) do not display some of the physical or facial features that are present in someone with FAS, in all three cases, brain damage has occurred. The cognitive, learning and behavioral impacts will be different for all individuals because each person is uniquely affected by alcohol use, but any diagnosis means that the brain has been affected by alcohol use during pregnancy. Regardless of the specific diagnosis, children with special needs require accommodations.
8. MYTH: People with FASD have low IQ’s.
This is sometimes true, but not always. FASD affects every individual differently and people will experience strengths and challenges in different areas. Some individuals may have an average IQ, but experience other cognitive difficulties, including difficulties with impulsivity, staying on task, judgment, problem-solving, relationships, sensory integration and/or time management. Many students with FASD score higher on IQ tests than is representative of their ability to function in the classroom or in real life situations.
9. MYTH: Behavior is a choice. People with FASD just need to try harder!
Most healthy adults can control their own behavior and follow societal norms. This is not true for many people with FASD. FASD and other such “invisible disabilities” that affect behavior are often under-diagnosed because behavior is frequently assumed to be a choice. Experts stress that the brain damage associated with FASD often prevents people from being capable of controlling their behavior. For that reason, it is important to change the assumption that “they won‟t behave” to the understanding that “they can’t behave.”
10. MYTH: Children usually plateau at grade 4 in their ability to learn.
At about grade 4, there is a change in the way that all children learn in the classroom. The curriculum lessons become more abstract, children are expected to work more independently, and the method of teaching becomes less interactive and more lecture style. The new materials, expectations and teaching approaches are very challenging for students with FASD and they may appear to stop progressing or learning. If teaching can remain interactive, visual and concrete, and support is provided, students with FASD can learn in all grades.
11. MYTH: The behavior problems associated with FASD are a result of poor parenting.
No. Brain damage caused by prenatal alcohol exposure leads to information being processed differently. Memory difficulties, poor problem-solving abilities, sensory stimulation issues and a poor understanding of reality often lead to behavior problems. Children may respond inappropriately to a particular situation and feel frustrated, embarrassed or angry.
12. MYTH: The mothers of children with FASD must be alcoholics; social drinking wouldn’t cause FASD.
Experts do not know how much alcohol a pregnant woman can safely drink. However, they do know that the more alcohol a pregnant woman consumes, the greater the risk to the developing fetus. Drinking regularly, even one drink daily, is considered to be high risk. Drinking five or more alcoholic beverages on one occasion, called binge drinking, is also high risk. Many women who aren’t addicted consume these amounts of alcohol. There is no known safe amount of alcohol during pregnancy.
13. MYTH: The mothers of children with FASD could have easily chosen not to drink during pregnancy. They damaged their children through callousness or indifference.
Alcohol addiction is often related to complex and long-term issues involving abuse, mental health problems and violence and is difficult to overcome. Pregnancy is a critical time for women to stop or reduce their use of alcohol. In order to do so, they need respect, understanding and caring support. Many pregnancies are unplanned, and often women are unaware they are pregnant until they are well into their first trimester. Since most women drink alcohol regularly, the developing fetus may have already been exposed to alcohol. Discontinuing use of alcohol, ensuring adequate nutrition and reduction of stress will help to ensure the best possible outcomes.
14. MYTH: A woman who has FASD will have children with FASD.
The only cause of FASD is alcohol use during pregnancy. There is no genetic link for this disability. If a woman with FASD abstains from alcohol during her pregnancy, her baby will not have FASD.
Useful Links
FASD Myths Perpetuated by Media Coverage
FASD and IQ Myths, Part 1
FASD and IQ Myths, Part 2
Myths and Facts About Fetal Alcohol Spectrum Disorders
FASD can co-occur with many disorders, such as:
In addition, an FASD can lead to many of the psychosocial stressors noted in the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV), such as:
The DSM-IV has no codes for fetal alcohol spectrum disorders. For insurance purposes, providers may list a co-occurring mental illness as the primary diagnosis. Regardless of which diagnostic code is used, an FASD must be seriously considered when developing an individual’s treatment plan. Useful LinksHow Fetal Alcohol Spectrum Disorders Co-Occur With Mental Illness |
Downloads
Discriminating the Effects of Prenatal Alcohol Exposure From Other Behavioral and Learning Disorders
Examining Adaptive Abilities In Children With Prenatal Alcohol Exposure and/or ADHD
How FASD Occurs With Mental Illness
Each individual affected by FASD will require their own treatment plan. Some people will require few services; others may require a great deal. Treatment depends on the type of diagnosis or diagnoses of each person, the age of the person, and on their individual strengths and weaknesses. It will also be influenced on the availability and kinds of medical, educational, social, governmental, and other resources where the person lives.
Here is a simple list of the types of treatment that individuals and families may want to consider when faced with different challenges of living with FASD.
- Medical and Dental Services, including allied health (speech and language services, occupational or physical therapy, etc.)
- Non-traditional health services (holistic, nutritional, or other types of treatments that you may want to explore)
- Psychological Services
- Psychiatric Care (including medication)
- Inpatient
- Outpatient
- Educational Support Services
- Residential Treatment
- Vocational Rehabilitation Services
- Addiction Services
- Legal Services
- For Financial or governmental support claims (Social Security, Regional Center, Special Needs Trusts, etc.)
- For Criminal or Civil Suits involving your FASD-affected loved one, not as a beneficiary but as a defendant
Useful Links
Treatments
Effective Behavioral Treatments for Persons Affected By FASD
Behavior Environmental Adaptation Model (Word Document)
Fetal Alcohol Spectrum Disorder Treatment, State of Maryland Information
Effective Behavioral Treatment for Persons with FASD
What Worked for Us – One Family’s Suggestions Rearing Two Sons with FASD
Art Therapy and FASD (Fetal Alcohol Spectrum Disorders
Downloads
Research about FASD may study how alcohol affects an animal cell, or the brain of a developing animal or human fetus at different stages of gestation. It may look at socioeconomic factors or trends which influence the patterns of drinking during pregnancy in different cultures, or among women who drink rarely or often. Research has been done on the prevalence of persons affected by FASD in the special education system, and in the criminal justice system, as well as in different countries. FASD research may examine the varieties of behaviors of children who have FASD, or how the brain of a person with prenatal alcohol exposure differs from a person who does not. Research may assess different types of medication or other treatment on physical conditions or behavioral problems associated with FASD in children, adolescents or adults.
Regardless of the type of specific investigation conducted, or whether is is carried out by a neurologist, pathologist, psychologist, sociologist, criminologist or other type of analyst or team of researchers, research in FASD typically is undertaken for one of two reasons: preventing FASD or treating FASD.
Preventing FASD
This research track focuses on study into the use of alcohol among woman who may become pregnant or who are pregnant.
Treating FASD
This research track focuses on the study of persons who are affected by FASD.
Select one of the sub-pages below to review information about either of these research directions.
Useful Links
FASD Research Search Site in FASD Connections
National Organization on Fetal Alcohol Syndrome Journal Article Search
American Academy of Pediatrics
Collaborative Initiative on Fetal Alcohol Spectrum Disorders
Fetal Alcohol Spectrum Disorders Study Group
FASD Research From 1973 to 2004
National Institute on Alcohol Abuse and Alcoholism Issue of Alcohol Research and Health Special Issue, “Fetal Alcohol Spectrum Disorders”
Fetal Alcohol Spectrum Disorders Center for Excellence Advanced Search of FASD Database
FASD research compiled by Not a Single Drop.org
Many parents and caregivers of individuals who are affected by FASD struggle not only with the day-to-day and emotional costs surrounding the challenges caused by fetal alcohol damage, but also with the financial impact of caring for their loved one. In addition, families and professionals who are concerned with FASD in our society understand that, in order to draw the attention of governments and legislators to the importance of structures and services for those who are affected by prenatal alcohol exposure, the financial impact of FASD must be noted.
What Are the Financial Costs for Caring for Individuals Affected By FASD?
In 2003, the SAMHSA (Substance Abuse and Mental Health Services Administration) FASD Center for Excellence published this report. It provides information on how much money FASD costs federal and state governments in the United States.
Direct costs include the actual use of goods and services by an affected individual, such as:
- Health care
- Mental health services
- Special education
- Residential care
- Vocational rehabilitation
- Costs for incarceration
Indirect costs include the loss of an individual’s potential productivity. The needs of individuals affected by FASD currently generate considerable costs for the social welfare, educational, medical, judicial and correctional systems and significant challenges for
communities. These indirect or “opportunity” costs include:
- Disability
- Mortality
- Morbidity
- Incarceration
The SAMHSA report stated that direct costs were $3.9 billion, and indirect costs added another $1.5 billion. Canadian research published in 2006 corroborated that the annual direct costs of FAS alone are approximately $4 billion. These amounts are based on statistics which estimate an FAS birth rate of 2 per 1,000 births.
The latest studies of the incidence of FASD estimate that 40,000 children are born each year in the U.S. affected by alcohol exposure in the womb. That translates to one new case of FASD out of every 100 births. In other words, each day, from 6-22 children with FAS are born in the United States, and as many as 87-103 more are born with FASD.
Most of the existing research takes into account only FAS, which is the most extreme of the conditions caused by prenatal exposure to alcohol. The SAMHSA report acknowledged that the costs of FAS “represent the tip of the iceberg.” FASD is much more common, and individuals with FASD make up a much larger group than those diagnosed with FAS. Thus, these results underestimate the economic burden associated with all levels of prenatal exposure to alcohol.
What Are the Financial Costs for Caring for One Person Affected By FASD?
In The 5 Million Dollar Baby, the author observed data from 2000 that estimated that one child affected with FAS has expenses of almost five million dollars. These include: $1,496,000 for medical costs, $530,000 for psychiatric care, $354,000 for foster care, $12,000 for orthodontia, $6,000 for respite care, $240,000 for special education, $624,000 for supported employment, $360,000 for SSI, and $1,376,000 for residential placement. The $5 million figure does not include indirect costs, which are probably considerable, such as: costs of residential care range from $2,000 per month for a group home to $4,500 per month for prison to $24,000 per month for psychiatric hospital care. Studies show that 60% of individuals with FASD spend time in an institution (mental health facility or prison)
The indirect costs include the poor quality of life of many individuals with FASD; the lost income of the individual and of the stay-at-home caregiver (in most cases, an adoptive mother). Most individuals with FAS do not have an IQ low enough to qualify for state or federal services for the developmentally disabled. However, most adults with FASD require long-term support with close supervision for the rest of their lives.