13An individual’s place, and success, in society is almost entirely determined by neurological functioning.
14A neurologically injured child is unable to meet the expectations of parents, family, peers, school and career and can endure a lifetime of failures.The largest cause of neurological damage in children is prenatal exposure to alcohol.These children grow up to become adults.Often the neurological damage goes undiagnosed, but not unpunished.
15What is FASD? Fetal Alcohol Syndrome (FAS), Fetal Alcohol Effects (FAE),Partial Fetal Alcohol Syndrome (pFAS),Alcohol Related Neurodevelopmental Disorders (ARND),Static Encephalopathy (alcohol exposed) (SE) andAlcohol Related Birth Defects (ARBD) are all names for a spectrum of disorders caused when a pregnant woman consumes alcohol.
16"Of all the substances of abuse, including heroin, cocaine, and marijuana, alcohol produces by far the most serious neurobehavioral effects in the fetus.”--Institute of Medicine 1996 Report to Congress
17Ethanol alone was found to interact with over 1000 genes and cell events. Ethanol responsive genes directly regulate and are themselves regulated by the activity of other proteins and cell processes.GeneticsUddin RK, Treadwell JA, Singh SM Department of Biology and Division of Medical Genetics, The University of Western Ontario
18There is no safe level of alcohol consumption during pregnancy.
20Legally intoxicated is defined as a Blood Alcohol Level (BAL) of .08%. Permanent brain cell damage begins at a BAL of .07%.A 100 lb (45 kg) female consuming 5 standard drinks will reach a BAL of .25% - three times the legal limit. BAL reduces .01% per hour.A drink equals a 12 oz. regular beer, 1 oz. shot of 100 proof liquor, 1.5 oz. shot of 80 proof liquor, or 4 oz. glass of regular table wine.
21Statistics Canada, Canadian Community Health Survey, 2000/01 6.8% of girls ages 12 to 1419.8% of girls age 12 to 1926.0% ages 20 to 2419.9% ages 20 to 34 consumed 5 or more drinks on each occasion 12 or more times per year An additional:13.8% of girls ages 12 to 1432.2% ages 15 to 34 consumed 5 or more drinks on each occasion 1 to 11 times per year.
22Prenatal Alcohol Exposure 37% of babies have been exposed to multiple binges (5+ drinks/session), often before the girl knew she was pregnant.Another 42% are exposed to multiple sessions of 1 to 4 drinks per occasion.15% to 18% continue to drink throughout the pregnancy, 4% at elevated levels.
23Maternal prenatal alcohol consumption even at low levels is adversely related to child behavior. The effect was observed at average exposure levels as low as 1 drink per week.
24Alcohol Startle Response Just one glass of wine a week can make babies “jump” in the womb throughout a nine-month pregnancy. Experts believe this abnormal hyperactive behaviour is the result of alcohol slowing or retarding the formation of the central nervous system.Ultrasound image of fetus when exposed to alcohol
25FASD is so grossly under-reported that the traditional FAS statistics are almost meaningless. Very few doctors have received any training in diagnosing FASDMany will not diagnose FASD for fear of stigmatizing the child and/or the mother.
26FASD is not a threshold condition. FASD is a continuum ranging from mild intellectual and behavioural issues to the extreme that often leads to profound disabilities or premature death.It is somewhere in the middle of the continuum that the issues attract the attention of parents, educators, medical and social work professionals, and eventually the justice system.
27IncidenceMost of the issues that attract sufficient attention are behavioural and performance issues."The most outstanding characteristics of FAS are bad judgment and the inability to make the connection between an act and its consequences." (Streissguth, AP)
28IncidenceApproximately 20% of Canadian school age children are receiving special education services, most for conditions of the types known to be caused by prenatal alcohol exposure.
29Alcohol as a teratogenFoolish, drunken, or harebrain women most often bring forth children like unto themselves Aristotle in ProblemataBehold, thou shalt conceive and bear a son: And now, drink no wine or strong drink.Judges 13:7 (1070 B.C.)
31Brain damage resulting from prenatal alcohol photo: Clarren, 1986
32Alcohol is toxic at all concentrations Damage varies due to volume ingested, timing during pregnancy, peak blood alcohol levels, genetics, mother’s health and nutrition, and environmental factors.
33FASD is a lifetime disability It is not curable. A child does not "grow out of it".However, early diagnosis and intensive, and appropriate, intervention can make an enormous difference in the prognosis for the child.
34FAS – Only the tip of the iceberg Fetal Alcohol SyndromePartial Fetal Alcohol SyndromeAlcohol Related Neurodevelopmental DisabilitiesAlcohol Related Birth DefectsClinically suspect but appear normalNormal, but never reach their potentialAdapted from Streissguth
35Early diagnosis can help prevent secondary disabilities such as mental health problemsdropping out of schooltrouble with the law andsubstance abuse.
36Parents often find that their ability to cope with the child's behavior changes dramatically when they understand that the problems are most likely based on organic brain damage, rather than the child's choice to be inattentive or uncooperative.
37Prenatal alcohol damage can include: Loss of intellectual functioning (IQ)Mild to severe vision problemsDangerously high pain toleranceSevere loss of intellectual potentialMental RetardationDyslexiaSerious maxilo-facial deformitiesDental abnormalitiesCleft palate
38Immune system malfunctioning Behavioral problemsAttention deficit disordersADD/ADHDExtreme impulsivenessPoor judgementLittle or no retained memoryDeafnessLittle or no capacity for moral judgement
39Little or no capacity for interpersonal empathy Sociopathic behaviourEpilepsyTremorsCerebral palsyRenal failureAsthmaComplex seizure disorder
40Developmental speech and language disorder Developmental delayHeight and weight deficienciesTight hamstringsCognitive perseverationEcholaliaAutistic traitsRigiditySleep disorder
43FAS Physical Abnormalities 98% are under normal height and weight84% Microcephalic89% Mental and Motor Retardation80% Speech impediments20% Hearing problems20% Swallowing/Feeding problems72% Hyperactive58% Slack muscles20% Autism/Aggressive/Social Problems
44FAS Physical Abnormalities 95% Facial anomalies29% Heart defects10% Kidney defects46% Genital deformities25% Eye problems16% Bent crooked little finger51% Shortened and bent little finger13% Underdeveloped fingers9% Hip deformities16% Small teeth
45FAS Physical Abnormalities 30% Pigeon Chest7% Concave chest7% Cleft palate44% Spinal dimple12% Hernia35% Hairgrowth on back of neck
46Without diagnosis, FASD can create a number of secondary disabilities.
47The girls get knocked up and the boys get locked up. They are followers, easily misled, with little or no appreciation of consequences. Without intervention, many drop out of school, ride the justice system merry-go-round or become "homeless street people and squeegee kids".They are required to compete in society but have been denied the tools to do so.
48The brain's Frontal Lobes control: judgement, inhibition, concentration, self-control, conscience, personality and emotional traits as well as cognition and memory, motor speech and movement skills.
49The Left Hemisphere deals with language based memory logical interpretation of languagemathematicsabstraction and reasoningfacts and rules (such as safety and social).
50The Right Hemisphere deals with holistic functioning processing of images, sound, touch,for a "holistic" picture.Memory here is visual, auditory and spatial.
51So, the Left side is logic, facts, rules. The Right side is sensory input and reactive.
52The Corpus Callosumconnects right and left sides to allow communication between the hemispheres.
53The Right side senses input, checks with the Left side to see if there are rules to deal with this pattern of input, integrates the stored information and reacts in a modified way.Damage to any of these systems causes very poor, impulsive and inappropriate response.
54Corpus callosum abnormalities Mattson, et al., 1994; Mattson & Riley, 1995; Riley et al., 1995
55Alcohol seriously damages the physical structures, "wiring" and brain chemistry.
56FAS (Fetal Alcohol Syndrome) individuals have a distinctive physical appearance and lower IQs, but have lower crime and addiction rates than individuals with FAE/ARND as they get earlier diagnosis and can be better protected by society and their parents.photo: Clarren
57While individuals with FAE (Fetal Alcohol Effects) / ARND (Alcohol Related Neurodevelopmental Disabilities) may lack the outward physical appearance of alcohol damage, the internal damage to the brain and other organs can be just as serious as FAS with the outward physical appearance features.
58However, because individuals with ARND / FAE "look normal" they are expected to perform normally. These issues lead to secondary disabilities.
59Individuals with ARND / FAE between the ages of 12 and 51: 95% will have mental health problems;68% will have "disrupted school experience";68% will experience trouble with the law;55% will be confined in prison, drug or alcohol treatment centre or mental institution;52% will exhibit inappropriate sexual behaviour.
60Individuals with ARND / FAE between 21 and 51: more than 50% of males and 70% of females will have alcohol and drug problems;82% will not be able to live independently;70% will have problems with employment
61It is useless and cruel to punish someone for having been born with a disability. You cannot cure brain injury with punishment.
62Costs of FASD:Each individual with FAS individual costs the taxpayer more than $3 million (Canadian Funds) in his or her lifetime (health problems, special education, psychotherapy and counseling, welfare, crime, and the justice system).More than 50% of prisoners are affected by prenatal alcohol exposure.It costs approximately $120,000/year to imprison a Young Offender and $82,000 for an adult offender.
63Add on: the lifetime loss of income the high costs to the families (foster, adoptive or biological) who raise and care for children and adults with FASDthe lost income of a parent who must care for the exceptionally high needs of a child with FASD
64Add on:the costs to families whose child with FASD is permanently dependent upon themthe costs of legal services for defending their child in the courtsthe cost of stress caused divorce, etc.The list goes on and on.
65That is your baby's brain on alcohol. DemonstrationBreak a raw egg into a wine glass. Add one ounce of alcohol. Watch the clear part develop white streaks as the alcohol "cooks" it.That is your baby's brain on alcohol.
66Student Checklist learns a simple task but forgets quickly hurts others by biting, kicking, etc.has not developed any friendshipsseems not to hear so a hearing loss is suspectedfrequently does not attend to social / environmental stimulidoes not use toys appropriately
67does not follow simple commands that are given once strong reactions to routine/changes in environmentdoes a lot of lunging and darting aboutnot responsive to other people's facial expressions/feelingshas special abilities in one area of development which seems to rule out mental retardation
68Speech does not follow simple commands involving prepositions severe temper tantrums or frequent minor tantrumsdoes not imitate other children at playdoes not wait for needs to be met, wants things immediatelydifficulties with toilet trainingoften frightened or very anxious
69looks through peoplefrequently unaware of surroundings and may be oblivious to dangerous situationsis very destructivea developmental delay was identified at or about 30 months of agestares into space for long periods of time
70as a baby was irritable with weak sucking reflex as a baby had feeding difficultiesas a baby experienced difficulty establishing regular sleeping patternsnot afraid of strangersshort for agesmall headstrong need for bodily contact (patting, touching, etc.)
71problems in fine motor control problems in gross motor-controltrouble with sequencing (counting, etc.)difficulty controlling impulsesDifficulty predicting consequencesdifficulty understanding abstract conceptsdifficulty seeing sameness in daily living situations and in making generalizations
72Some Solutions: Medical Education Teach physicians and other health professionals to screen, diagnose and treat FASD.Recognize and deal with the continuum, not just the extremes of FASD.Actively screen for alcohol use in all patients and give advice.Recognize medical issues of alcohol and all personal, family and societal ramifications.
73Some Solutions: FASD Prevention Folic Acid should be added to all beverage alcohol.Break the cycle. Properly fund addiction intervention and rehabilitation programs.Identify women at risk of having children with FASD and intervene.Meconium testing for Fatty Acid Ethyl Esters should be mandatory for every birth.Intensive family and social service supports for FASD and recovering alcoholics.Poverty is a result of, and breeds, substance abuse. Deal with it.
74Some Solutions: Alcohol Vendors The beverage alcohol industry pays less than 1% of the total damages caused by their products. Increase taxes on beverage alcohol.All tax revenue to be returned to support rehabilitation programs and victims of alcohol.Remove all incentives for governments to promote alcohol.
75Some Solutions: Alcohol Vendors End all government supports for beverage alcohol industry, including "wine and beer tourism".End all alcohol advertising.Alcohol must be served with food.Breathalyzers in all alcohol establishments.Ban alcohol sales incentives, contests, games.Ban "Happy Hour" discounted promotions. They encourage binge drinking.
76Some Solutions: Public Education Educate the public that addiction is a medical issue not a moral failure.Educate children from a very young age about dangers of alcohol.Have youth design anti-alcohol programs targeting youth.The ONLY purpose of beverage alcohol is to make your brain take a hike.
77Some Solutions: Research Better diagnostic tools for the full range of FASD damage.True incidence and scaling of FASD damage.Chemically turn-off addiction center in brain.
78Prevention – The Birth to 3 Program Parent-child assistance programIntensive home visitation model for the highest risk mothersParaprofessional AdvocatesPaired with client for 3 years following the birth of the target BabyLink clients with community servicesExtensively trained and closely supervisedMaximum caseload of 15OutcomesFewer alcohol/drug affected childrenReduced foster care placementReduced dependence on welfareGrant, T.M., 1999; Ernst, C.C., et al
79Discussion Topics FASlink Support Family environment Community healing The ProfessionalsAddiction recoveryMedicationCalming techniquesFurniture safetySleeping tentEarly diagnosisEarly interventionSchool interventionJustice SystemCareersFinancial HelpDisability IncomeSpecial Services at HomeDisability Tax CreditFriendshipsScoutingSchoolMusic
80FASlinkprovides Internet online information and support resources for those dealing with medical, legal and educational issues of children prenatally exposed to alcohol.
81FASlink www.faslink.org FASlink serves parents (birth, foster, adoptive and grandparents), caregivers, adults with FAS, doctors, teachers, social workers, lawyers, students, government policy makers, and others whose lives are touched by Fetal Alcohol Syndrome.
82FASlink FASlink’s website serves more than 400,000 people annually. FASlink receives about 100 letters per day to be shared with the members through the FASlink Discussion Forum.
83FASlinkThe FASlink Archives are an online searchable database of more than 100,000 letters and articles on FASD issues.It is the largest FASD resource in the world.
84FASlink provides:Information, advocacy and support services for individuals and families dealing with FASDEducation of professionals (medical, educational, social services and justice)Electronic publishing of Internet and CDROM based FAS information and tools
85FASlink provides: Initiatives in public information and education Monitoring of company, governmental and NPO activities, research and legislation that may affect FAS individuals.International co-operation and supportConcept development for long-term care options.
86FASlink provides:Initiatives for the development of diagnostic clinicsConcept development for rehab facilities for pregnant substance abusers and their dependant children.Development of alternatives to justice system incarceration for individuals with prenatal brain injury.