Day 1: Enhancing Employment Supports Enhancing Employment Supports for for Understanding and Persons Affected by Persons Affected by Supporting Youth and Adults with FASD Fetal Alcohol Spectrum Disorder Fetal Alcohol Spectrum Disorder June 14 and 15, 2012 Facilitator: Diane McGregor Calgary, Alberta Understanding and supporting Facilitators: Johnathon Red people living with FASD means Gun changing the way that Sean McEwen WE think and behave. Diane McGregor F etal A lcohol S pectrum FASD Awareness: FASD Awareness: D isorder Characteristics and Characteristics and Challenges Challenges The language we are now using to describe the range of possible effects that can occur when a fetus is exposed to alcohol. “When I first heard about FASD is not a diagnosis—rather, it is an FASD, I was like, so “umbrella” term that characterizes a what…FAS, FAE, ADD, spectrum of disorders. ODD…I figured if it was a disorder, then I had it!” The spectrum encompasses effects that Peter, range from severe growth, intellectual and physical deficits to apparently normal Young Adult with FASD growth, facial and intellectual abilities. Life long challenges. 1
Other Terms and Other Terms and How is FASD caused? How is FASD caused? Acronyms Acronyms • FAS Prenatal exposure to alcohol. • FAE • ARND Alcohol is a neurobehavioral • NDBD teratogen: an agent that raises the incidence of congenital abnormalities. • ADD Many teratogens: x-rays, heavy • ODD metals (lead), thalidomide, • CD cocaine…most recently, BPA Alcohol is the most pervasive. Alcohol reaches the embryo or fetus by passing through the mother’s blood. FASD is 100% preventable. It crosses the placenta and enters the fetal bloodstream. It can then pass into all developing tissues. Is it Is it really??? really??? 2
Alcohol Impacts the Formation Alcohol Impacts the Formation Areas of the brain that appear to Areas of the brain that appear to be be of the Brain during Fetal most affected by prenatal exposure to most affected by prenatal exposure to of the Brain during Fetal alcohol alcohol Development Development Cell production Corpus Callosum Cell death Hippocampus Cell mobility Cerebellum Cell migration Prefrontal Cortex This affects the size, organization and structure of affected areas. A Spiritual Perspective A Spiritual Perspective Factors that Factors that Increase Risk Increase Risk The baby’s spiritual connection of of to his/her mother can be disconnected when she uses Fetal Susceptibility Fetal Susceptibility alcohol during the pregnancy. The baby is not able to grow in an environment of peace and Health security – the development of a Factors healthy, calm baby is thus Interrupted. • Birth order (>3 previous births) • Maternal age >30 years Aborig i nal Approaches to Fetal Alcohol Spectrum • Maternal stress Disorder Special report of the Ontario Federation of Indian • Maternal health factors, malnutrition, Friendship Centers pre-natal care 2002 www.ofifc.org 3
Family and Social Substance Use Factors •Drinking behavior of others in the home, •Co-occurrence of maternal including the smoking and/or drug use father/woman’s partner •Chronicity of maternal alcohol •Loss of other children consumption to foster or adoptive placement •Timing and amount of dose: chronic exposure, binge drinking •Social (5-7 drinks), occasional exposure. network/community that supports drinking •No reduction during pregnancy behaviors Neurobehavioral challenges: Clinical Features of Clinical Features of Fetal Alcohol Spectrum Disorder Fetal Alcohol Spectrum Disorder • Learning disabilities (particularly in (from Fetal Alcohol Spectrum Disorder: Canadian Guidelines for mathematics) Diagnosis, CMAJ , 2005) • Delays in language and motor skills • Problems with executive function and 1. Confirmed maternal alcohol exposure working memory 2. Evidence of a characteristic pattern of • Difficulties understanding and facial anomalies processing complex information 3. Evidence of growth retardation • Impairments in adaptive functioning 4. Evidence of central nervous system (particularly social competence) neurodevelopmental abnormalities that •ADHD present in approximately 70% result in behavioral or cognitive challenges that are inconsistent with • Mental health problems, particularly anxiety and depression developmental level and cannot be explained by familial background or environment alone. 4
Current Myths and Current Myths and Misconceptions Misconceptions Myth : People with FASD suffer Myth : People with FASD show severe intellectual impairment. distinctive facial features. Fact: We now know that fewer than 50% Fact: Approximately 12% of of individuals are intellectually disabled. people with FASD evidence overt Most people diagnosed with FASD have characteristics of the “FASD face”. IQ scores within the average range and many score above average. In fact, the facial features are primarily associated with individuals who are most severely affected. Myth: People with FASD will never be able to live independently and will require constant supervision Because of these beliefs, many thorough-out their lives. individuals go undiagnosed. This also means that assumptions Fact: While the journey can be and judgments are made about a very challenging for many person’s behaviors and motives individuals with FASD, many, when the real truth is an many, many people create lives of underlying neurological disability. meaning and purpose….including long term employment, having families, developing strengths and abilities, 5
“Growing up, like my Dad literally Is There Is There One FASD Profile? One FASD Profile? said, ‘Oh, you can never have kids. Never support kids. You can never have this. You can never do that’. Well, I am going to prove FASD is a complex him wrong!” neurodevelopmental disorder that Allan, 19-year-old man with FASD involves an array of biological, environmental and psychological “When I was a baby, my parents factors. were told that I would never be able to learn and that I would (Gibbard, W. B., Alberta Children’s never be able to take care of Hospital) myself. I guess they were wrong.” Jane, 28-year-old woman with FASD “Never say never!” This means that This means that… … Take Another Look: FASD Take Another Look: FASD Our Way! Our Way! …no one explanation or diagnosis accounts for the array of challenges people face, Video written and produced by …no one intervention or program Kaleidoscope Participants or treatment can make everything right, …and, no two people are alike. 6
Prognosis and Life Course Prognosis and Life Course Growing Up with FASD Growing Up with FASD • The cognitive and behavioral effects persist into childhood and early adulthood, leading to a poor prognosis over the life span. We are all a human puzzle, but we didn’t get all the • The risk of adverse life outcomes is pieces when we doubled for those with more subtle effects as early diagnosis has been were born. It’s up identified as a protective factor. to us to find the other pieces and complete ourselves. Myles Himmelreich , Public Speaker, Peer Mentor Secondary D Secondary Disabilities isabilities Childhood for a Person with Childhood for a Person with FASD: FASD: “Pretty normal Pretty normal” ” or or “ “pretty pretty “ wild” wild ”? ? • Often describe self as “just a normal kid” • Often identify a range of behavior challenges but they do not talk about these behaviors as “problems” • They are just things kids do “I got in trouble lots for the stupid things normal kids do.” Source: Streissguth, A. University of Washington 7
Into the Abyss: When When ‘ ‘pretty pretty Into the Abyss: normal’ normal ’ ends. ends. Behavioral problems typically typically Behavioral problems start in early childhood start in early childhood Although childhood may have seemed although often are not although often are not “pretty normal”, adolescence is a terrible identified until child enters the identified until child enters the struggle. school system. school system. Peers Aggression Hyperactivity Bullied Feel weird Impulsivity “Used” Inattentiveness Early learning problems Longing for “Drive teacher nuts” belonging Do anything to Poor sleeping and eating habits connect Medications Special programs--learning and/or “what is wrong with me” behavior School Home Begins to break down in Jr High Problems with teachers Arguing Can’t do the work Fighting over HW Failing grades Sneaking around Special placement Withdrawal Moves make it difficult to fit in Ineffective Discipline Nothing really works By high school, they are skipping or missing most “Stupid Rules” classes Out of home placement? Core credits not attained 8
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