Fetal Alcohol Syndrome

DISABILITY CATEGORY: Other Health Impairments—Alcohol-related Diagnoses

TYPES: The spectrum of alcohol-related diagnoses includes Fetal Alcohol Syndrome (FAS), Fetal Alcohol Effects (FAE), PFAS (Partial Fetal Alcohol Syndrome), ARND (Alcohol Related Neurodevelopmental Disorder) or ARBD (Alcohol Related Birth Defects).

Our nation’s special education law, the Individuals with Disabilities Education Act (IDEA) defines diabetes under “other health impairment,” which means…

            “…having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that–

• is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, and sickle cell anemia; and

• adversely affects a child’s educational performance.”

[34 code of Federal Regulations §300.7(c)(12)]

Other Definition :  Prenatal exposure to alcohol can cause a range of disorders, known as fetal alcohol spectrum disorders (FASDs). One of the most severe effects of drinking during pregnancy is fetal alcohol syndrome (FAS). FAS is one of the leading known preventable causes of mental retardation and birth defects. If a woman drinks alcohol during her pregnancy, her baby can be born with FAS, a lifelong condition that causes physical and mental disabilities. FAS is characterized by abnormal facial features, growth deficiencies, and central nervous system (CNS) problems. People with FAS might have problems with learning, memory, attention span, communication, vision, hearing, or a combination of these. These problems often lead to difficulties in school and problems getting along with others. FAS is a permanent condition. It affects every aspect of an individual’s life and the lives of his or her family. (Source: The National Center on Birth Defects and Developmental Disabilities)

FACTS AND STATS: FAS is the leading cause of mental retardation in western civilization. However, most persons with FAS have an IQ in the normal range (Streissguth, 1997). The incidence of Fetal Alcohol Syndrome in America is 1.9 cases per 1,000 births (1/500). The incidence of babies with disabilities resulting from prenatal alcohol exposure is 1/100! FAS/FAE is a major health issue in western civilization today. More American babies are born with FAS than with Down Syndrome, MD, and HIV combined.

"Alcohol causes more neurological damage to the developing baby than any other substance." Institute of Medicine report to Congress:

• FAS causes serious social and behavior problems.

• Each year in the US 5,000 babies are born with FAS.

• Five times as many are born with alcohol related disorders.

• No amount of alcohol is known to be safe during pregnancy.

• FAS and related disorders are 100% preventable.

(Sources: http://www.come-over.to/FAS/ and http://www.come-over.to/FAS/Nutshell.htm) 

CAUSES: Fetal alcohol syndrome is caused by alcohol that has crossed over the placenta into fetal blood. Alcohol crosses from the mother's blood to the baby's blood through the placenta.

Even a small amount of alcohol can damage a developing fetus. Doctors do not know how much alcohol it takes to cause defects. (Source: Brigham and Women’s Hospital website)

PREVENTION: When a pregnant woman drinks alcohol, so does her unborn baby.  There is no known safe amount of alcohol to drink while pregnant and there also does not appear to be a safe time to drink during pregnancy either. Therefore, it is recommended that women abstain from drinking alcohol at any time during pregnancy.  Women who are sexually active and do not use effective birth control should also refrain from drinking because they could become pregnant and not know for several weeks or more. (Source: Center for Disease Control and Prevention)

CHARACTERISTICS: In order to receive a diagnosis of FAS from a physician, three criteria must be present:

• Characteristic facial features, including a flattened midface, thin upper lip, indistinct/absent philtrum and short eye slits,

• Growth retardation - lower birth weight, disproportional weight not due to nutrition, height and/or weight below the 5th percentile, and

• Central Nervous System neurodevelopmental abnormalities, such as impaired fine motor skills, learning disabilities, behaviour disorders or a mental handicap (the latter of which is found in approximately 50% of those with FAS).

Fetal Alcohol Syndrome/Fetal Alcohol Effects are PERMANENT and cannot be outgrown. FAS/FAE babies and young children may have other specific distinguishable features:

• short stature

• small and thin

• physical problems, including hearing defects, organ imperfections or bone problems

• difficulty with eating

• difficulty developing a regular sleeping schedule

• difficulty learning how to walk

• difficulty learning toilet training

• impulsivity (e.g., running out into the street, going off with a stranger)

• hyperactivity

FAS/FAE children have learning disabilities, which can include difficulties in:

• learning language and language use, especially receptive language

• generalizing information

• mastering new or recently learned skills

• memory (e.g., remembering something from a year ago but not from yesterday)

• predicting outcomes or cause and effect

• distinguishing fact from fantasy

• distinguishing friends from strangers (e.g., may think someone they met five minutes ago is a friend)

• lack of learning from experience because they do not understand cause and effect, behaviour and experience

FAS/FAE adults continue to have the same learning difficulties they had as youth, and also often have difficulty with:

• the legal and court system, due to lack of understanding of cause and effect

• controlling alcohol consumption

• maintaining custody of their children

• mental health issues

Children with FAS usually reach their intellectual peak around grade 4 and begin to notice the differences between themselves and peers. Teenagers with FAS often have low self-esteem because of the learning and social differences between themselves and their peers. They may do unsafe things in order to be accepted, such as take a dangerous dare or engage in sexual activity to get love and attention. They have a very poor understanding of consequences and may feel depressed or even suicidal. Adults with FAS are at high risk for mental health problems. They are often socially isolated, have difficulty with interpersonal relationships, and may have difficulty functioning in many environments. Adults with FAS have spotty memories and often have difficulty distinguishing fact from fantasy. They need supported housing and employment programs because independent living is rarely an option.

This disability is PERMANENT - people with FAS/FAE do not 'get better.'

People with FAS/E often have dual diagnoses or co-morbidity, but they are not necessary for an FAS/E diagnosis. (Source: Source: Fetal Alcohol Syndrome/Effect: A Manual for Community Caring, Identification, Understanding & Intervention)

MEDICAL TREATMENT: There is no specific medical treatment for fetal alcohol syndrome. Children with the syndrome should receive special help with learning and social support. Families and children benefit from early intervention. Knowing what is wrong helps in understanding why the child acts differently than other children. Growing up in a supportive, nurturing home may help prevent social and mental health problems. Other things families and supports can do include the following:

• Provide consistent direction and structure. These children do not handle disruption well.

• Keep to routines.

• Establish simple rules, limits and consequences.

• Praise desired behaviors.

• Do not threaten. Violence or abuse increases the risk the child will learn to react in a similar fashion. These children often need special training to learn other ways to handle anger.

Special Education: Programs designed to meet the fetal-alcohol child's special needs improve the odds of learning. Messages may need to be patiently explained over and over again. Tasks may need to be broken down into smaller steps.

Social Services: Professional support helps a family cope with caring for a child with birth defects. Services might include respite care, or baby-sitting, which can give the parent a break. Parent training may include ways to handle behavior problems and stress-management techniques. (Source: Brigham and Women’s Hospital website)

PROGNOSIS: Outcome for infants with fetal alcohol syndrome is variable depending on the extent of symptoms, but almost none are normal when it comes to brain development.

The problems of the infant and child with fetal alcohol syndrome are diverse and difficult to manage. Cardiac defects may necessitate surgery. There is no effective therapy for mental retardation. (Source: http://www.nlm.nih.gov/medlineplus/ency/article/000911.htm#Treatment )

EDUCATIONAL IMPLICATIONS:

Strategies for Classroom Teachers

Attentional difficulties:

• Teach the student to use “self-talk” to help stay focused (e.g., “The first thing I have to do is ...”) and to curb impulsive behaviour (e.g,. “Stop and think”). Model this behaviour in order to encourage the student to do this.

• Teach the student to curb impulsive behaviour by knowing how to initiate action, when to initiate action, and how to inhibit behaviours until things are thought through.

• Use concrete reinforcements or reminders (e.g., the use of stop hand-signals) to help the student change problematic behaviour such as “calling out” in class.

• Consequences for inappropriate behaviour need to be immediate.

• A student who needs the stimulation of movement could do some activities, such as reading, in a rocking chair.

• Try meeting the need for physical stimulation by taping sandpaper to the underside of the desk or attaching a squeezing (and strength-increasing) ball to the desk.

• Some students are calmed by quiet background music.

• Arrange a quiet area to use when distractions are too great.

• Rhythmic activities such as choral reading, spelling and math chants are effective at holding attention.

• Establish a signal to indicate frustration.

• Teaching concepts through music can be effective.

• Make each activity brief.

• Ask the student for feedback about helpful learning behaviours and not-so-helpful learning behaviours. For example, “What can we do to make this work?” and “If this was not helpful, why not?”

Difficulties with social skills:

• Give the student direct and immediate feedback about unacceptable behaviour, how it is affecting others and how it is affecting the student. Label unacceptable behavior specifically. "The way you are poking the student next to you, that is not acceptable. You need to stop doing that right now!"

• Be aware that negative behaviour may be a symptom of unmet needs.

• Provide direct instruction in social behaviour skills.

• Allow the student to make mistakes. Help the student see their value in terms of what can be learned from these mistakes.

• Include the student as often as possible in the process of developing solutions to problems.

• Play turn-taking games. Pass an object around and when a student has the object it is that student’s turn.

• Set limits and consistently follow them. Don’t debate or argue over classroom rules or infractions of those rules.

• Encourage the student to use positive self-talk. "I can do this," "I am able to pay attention right now," and "I can figure this out."

• Develop a plan with the student, which can be followed when the student is feeling overwhelmed by people, sound, light, movement, or things.

• Develop with the student an entrance and exit routine for the day, or for each class.

• Encourage and permit the student to lead in child/young adult play on a regular basis.

• Encourage the child to “help” as a valued member of the classroom.

• Encourage decision making by giving the student choices and allowing the student to carry through with the choices they make.

• Use a variety of art forms as a means of communication regarding emotion, self-esteem, and body image.

Difficulties with language development:

• Choose simple material with illustrations.

• Use a plain piece of paper to put under each line of reading material.

• Tape record stories so the student can listen and read along.

• Use a picture dictionary to aid in vocabulary development.

• Use cues and aids to assist the student in following verbal instructions.

• Use verbal cues, such as songs or mnemonics to remind the student what to do next.

• Do not use figures of speech, euphemisms, or sarcasm. Be concrete in communicating with the student.

• Avoid “why” questions and essay type questions with these students.

• Help the student to learn a skill by teaching it in the environment in which the student is expected to perform the skill.

• Give instructions one step at a time, repeat information as needed. Check for understanding by asking the student to repeat directions in his or her own words, or by checking understanding with a partner.

• Develop a peer tutor to work with the student for reading practice, reviewing lessons, studying for tests, editing procedures, and proofreading.

• Create key word and sight word cards for vocabulary building, phonetic strategies, etc. Encourage the student to develop a vocabulary card index.

• Provide a photocopy or audio tape of important information.

• Use cut-up sentence strips to assist with word identification and story understanding.

• Use rhythm techniques such as slow rhythmic clapping to focus attention, and to reinforce learning.

• Match your communication level to the student, then introduce speech expanding techniques very gradually by adding one or two words at a time to what the student is saying.

• Use multi-modal strategies (visual, auditory, tactile, kinesthetic). For example, expose students to letters in a variety of situations.

• Use art projects to make abstract concepts more concrete.

• Consider alternative demonstrations of knowledge, such as videotaping, audio recording, and computer graphics applications.

• Teach and encourage the use of electronic spell-checkers, tape recorders, and word processors.

• Allow the student to write about own experiences to facilitate organization of thoughts.

(Source: http://www.come-over.to/SpecialEdFAS/contents.htm)

ORGANIZATIONS:

Fetal Alcohol Syndrome Family Resource Institute (FAS*FRI)
PO Box 2525 Lynnwood
WA 98036
253-531-2878
http://www.fetalalcoholsyndrome.org

The Fetal Alcohol Syndrome Family Resource Institute is dedicated to the preservation of families through the identification, understanding and compassionate care of individuals disabled by prenatal alcohol exposure.

National Association for Families and Addiction Research and Education (NAFARE)
122 S. Michigan Ave., Suite 1100
Chicago, IL. 60603
312-362-9607
http://www.cr-triangle.org

NAFARE is a nonprofit organization whose mission is to enhance the lives of children and families affected by substance abuse. This organization focuses on developing community-based programs that address the health, education, and social services needs of children.

National Center for Environmental Health
Fetal Alcohol Syndrome Branch
4770 Buford Hwy., NE (MS F-49)
Atlanta, GA 30341
770-488-7696 or 7370
http://www.cdc.gov/nceh/cddh/fashome.htm

The National Center for Environmental Health (NCEH) is part of the Centers for Disease Control and Prevention. NCEH’s Fetal Alcohol Syndrome Branch seeks to reduce the human suffering and societal burden resulting from the harmful effects of alcohol use during pregnancy.

National Organization on Fetal Alcohol Syndrome (NOFAS)
418 "C" Street North East
Washington, D.C. 20006
202-785-4585
http://www.nofas.org

NOFAS is committed to raising public awareness about FAS and seeks to implement innovative ideas in prevention, education, intervention and advocacy.

Al-Anon/Alateen Family Group Headquarters
1600 Corporate Landing Parkway
Virginia Beach, VA 23454-5617
757-563-1600 or 1-800-356-9996
http://www.al-anon.org

This organization helps families and friends recover from the stress of living with a friend or relative who has a drinking problem. Alateen is a recovery program for young people and is sponsored by Al-Anon members.

The Arc of the United States
1010 Wayne Avenue, Suite 650
Silver Spring, MD 20910
301-565-3842
http://www.thearc.org

With 1,000 chapters in the U.S., The Arc of the United States (formerly Association for Retarded Citizens of the United States) is the country's largest voluntary organization committed to the welfare of children and adults with mental retardation and their families. This organization provides information about educational campaigns and other materials that are helpful in FAS prevention efforts. To order publications from The Arc, contact:

The Arc’s Publications Desk
3300 Pleasant Valley Lane, Suite C
Arlington, TX 76015
888-368-8009
http://www.thearcpub.com

RELATED WEB SITES:

For Educators:

http://www.come-over.to/SpecialEdFAS/contents.htm If you are a classroom teacher who, for the first time, is about to teach a student with Fetal Alcohol Syndrome or Fetal Alcohol Effect (FAS/E), this guide can be helpful. Many of the strategies are general and may be appropriate for use with students who are not diagnosed with FAS/E, but who do share some of the learning needs of students with FAS/E. This resource guide is organized around areas of concern identified by experienced classroom and integration support teachers. Its goal is to provide teachers with a clear understanding of the needs of students with FAS/E.

For Parents and Educators:

http://www.thearc.org/faslist.html This resource guide was written for parents, families and educators who are involved in caring for, living with, and educating individuals with Fetal Alcohol Syndrome (FAS). The ability to access current and accurate information about FAS is critical in becoming a source of help and hope for children and adults living with FAS. The goal of this resource guide is to encourage you to learn more about FAS, including what causes it, how to prevent it, and how FAS impacts the everyday lives of people.

http://www.taconic.net/seminars/fas02.html

Website with information for parents as well as educators.

General:

http://images.google.com/images?q=fetal+alcohol+syndrome+&hl=
en&lr=&sa=X&oi=images&ct=title

Website with images of children with fetal alcohol syndrome and many links to further web sites.

http://www.come-over.to/FAS/

Everything you need to know about Fetal Alcohol Spectrum Disorders.

Publications:

Challenges and Opportunities: A Handbook for Teachers of Students with FAS by Peggy Lasser. A 178-page handbook providing over 200 instructional strategies to teach students with FAS and a teacher’s perspective on identification of FAS and providing needed services. It has been extensively reviewed by teachers, parents, medical professionals and other advocates and is a Vancouver (British Columbia) School Board publication.

FAS/E: A Standard of Care for Toddlers, Children, Adolescents and Adults

Order from: The FAS Family Resource Institute (FAS*FRI)

This brief booklet, written in 1998, includes ideas and suggestions from families concerning interventions for toddlers, children, adolescents and adults who have FAS/E.

Fantastic Antone Succeeds!
Experiences in Educating Children with Fetal Alcohol Syndrome
Edited by Kleinfeld & Wescott (1993)

Order from: University of Alaska Press, PO Box 756240, Fairbanks, AK 99775

This book discusses different strategies used by parents, teachers, social workers, and others that have been helpful in overcoming the challenges faced by young people with FAS.

My Name is Amanda and I Have FAE

Order from: FAS/E Support Network of B.C., #151 – 10090 152nd Street, Suite 187, Surrey, B.C. V3R 8X8 Canada

A book about Amanda and her brother Jonathan who both have FAS/E. It explains in a very simple way what FAS/E is and how children are affected by it.

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