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  • The newest diagnostic scale developed by Dr. Sterling Clarren and others does not use FAE PFAS replaced--ARBD-Alcohol Related Birth Defect ARND- Sometimes refers to Alcohol Related Neurodevelopmental Disorder
  • The older the woman the more severe the damage because as they get older women do not metabolize alcohol as well The more alcohol the more damage although the pattern of drinking is important. Binge drinking is more harmful than a very small daily dosage. Different systems and organs develop at different times during the pregnancy. Fraternal twins can actually be affected differently
  • Other longitudinal studies support this data. Recent Research in France showed a much higher rate of Suicide in FAS/FAE individuals.
  • websiteY4FASD-Ottawa..

    1. 1. Fetal Alcohol Spectrum Disorder Dr. Lori Vitale Cox [email_address] 506-523-8312
    2. 2. Fetal Alcohol Spectrum Disorder-FASD <ul><li>Spectrum of Neurological and Physical Disabilities </li></ul><ul><li>Takes in A Range of Physical and Behavioral Abnormalities </li></ul><ul><li>Caused by Prenatal Exposure to Alcohol </li></ul>
    3. 3. Is FASD A Health Problem In Canada? <ul><li>Incidence FASD in North America </li></ul><ul><ul><li>Estimated 1%-10% Per 1000 </li></ul></ul><ul><li>Higher Prevalence In Communities Where There Are High Rates Of Substance Abuse </li></ul><ul><li>Problem In Any Community Where Women In Their Childbearing Years Consume Alcohol </li></ul>
    4. 4. Researchers Estimate: <ul><li>Tens Of Thousands Of Canadian Adults Affected Fetal Alcohol Spectrum Disorders Never Diagnosed </li></ul><ul><li>( Donovan 1992, Boland et al 1998) </li></ul>
    5. 5. Fetal Alcohol Syndrome Disorder <ul><li>Most Preventable Birth Defect </li></ul><ul><li>One of the Top 3 Causes of Developmental Disabilities </li></ul><ul><ul><ul><ul><ul><li>Ability Levels Lower Overall </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>Often Within ‘Normal’ Range </li></ul></ul></ul></ul></ul><ul><li>Kaplan and Saddock’s Synopsis of Psychiatry (1998) </li></ul>
    6. 6. Diagnostic Categories <ul><li>New Canadian Guidelines </li></ul><ul><li>FAS - Fetal Alcohol Syndrome </li></ul><ul><ul><li>With Disclosure Or Evidence Maternal Drinking </li></ul></ul><ul><ul><li>Without Disclosure </li></ul></ul><ul><li>PFAS - Partial Fetal Alcohol Syndrome </li></ul><ul><li>Fetal Alcohol Effects </li></ul><ul><li>ARND -Alcohol Related Neurodevelopmental </li></ul><ul><li>Disorder </li></ul>
    7. 7. Primary Disability <ul><li>Death </li></ul><ul><li>Growth Deficiency </li></ul><ul><li>Characteristic Physical Changes </li></ul><ul><li>Brain-Central Nervous System Damage </li></ul><ul><li>Related to Pregnant Pattern and Quantity Mothers Drinking While </li></ul>
    8. 8. Primary Disability/Physical Changes <ul><li>May Have Defining Facial Features </li></ul><ul><ul><li>Smaller Eyes/Eyes Wider Apart </li></ul></ul><ul><ul><li>Long Smooth Phyltrum-Area Between Nose and Upper Lip </li></ul></ul><ul><ul><li>Thin Upper Lip </li></ul></ul><ul><li>May Be Smaller in Size and Stature as Child </li></ul>
    9. 9. Associated Physical Disabilities <ul><li>Changes in the Ear--Middle Ear Problems </li></ul><ul><li>Changes in the Eyes—Cross Eyes, Lazy Eye, Drooping Lids </li></ul><ul><li>Heart Problems </li></ul><ul><li>Spinal Bifida </li></ul><ul><li>Seizure Disorders </li></ul><ul><li>Skeletal Problems </li></ul>
    10. 10. Associated Physical Disabilities <ul><li>‘Failure To Thrive’-As an Infant </li></ul><ul><li>Sleep Problems </li></ul><ul><li>Eating Problems </li></ul><ul><li>Increased or Decreased Sensitivity to Pain, Cold, Heat, Touch, Noise etc. </li></ul>
    11. 11. CNS Changes <ul><li>But Often No Outward Physical Sign Just Brain or Central Nervous System-CNS-Changes </li></ul>
    12. 12. Alterations-Brain & Behavior <ul><li>Mattson and Riley Found: </li></ul><ul><li>The Absence Of FAS Facial Features Does Not Preclude Alterations In Brain And Behavior ( Mattson and Riley 2001) </li></ul><ul><li>Noticeable Brain Changes In Non-Dysmorphic Individuals-Those Without Characteristic Changes In Face-Using Functional MRI’s </li></ul>
    13. 13. Mattson and Riley (1996-2001) <ul><li>Reduction Volume, Change Shape, Location: </li></ul><ul><ul><li>Corpus Callosum </li></ul></ul><ul><li>Reduction In Volume: </li></ul><ul><ul><li>Basil Ganglia, Hippocampus, Amagdyla </li></ul></ul><ul><ul><li>Overall Cerebrum and Cerebellum </li></ul></ul>
    14. 14. Pre-Natal Exposure & the Brain <ul><li>Alcohol Exposure Seems To Damages Certain Areas of The Brain While Other Areas Appear Unaffected </li></ul>
    15. 15. Alcohol and the Brain <ul><li>Cerebellum—Coordination, Movement, Behavior and Memory </li></ul><ul><li>Basil Ganglia-Spatial Memory/ Behaviors </li></ul><ul><ul><li>Perseveration, Task Initiation, Innability to Switch Gears, Work Towards Goals, Perceive Time, Predict Behavioral Outcomes </li></ul></ul>
    16. 16. Alcohol and Brain <ul><li>Corpus Collosum-Processing Information From Right Brain to the Left </li></ul><ul><li>Hippocampus-Part of the Limbic System Involved in Memory and in Emotion </li></ul>
    17. 17. Brain Function/Mind Function <ul><li>Dysfunction In These Brain Structures </li></ul><ul><ul><ul><li>MEANS </li></ul></ul></ul><ul><li>Changes In Executive Functioning, Memory, Logic, Attention </li></ul><ul><li>Difficulty Functioning and Behaving </li></ul>
    18. 18. Mattson and Riley (1996) <ul><li>Individuals Exposed Without Facial Phenotype-Outward Physical Signs </li></ul><ul><li>Displayed Neurobehavioral Deficits </li></ul><ul><ul><li>Verbal Learning </li></ul></ul><ul><ul><li>Memory </li></ul></ul><ul><ul><li>Language </li></ul></ul><ul><ul><li>Attention </li></ul></ul><ul><ul><li>Visual-Spatial Ability </li></ul></ul><ul><ul><li>Lower Overall Cognitive Ability </li></ul></ul>
    19. 19. FASD and Understanding <ul><li>Difficulty Abstract Reasoning </li></ul><ul><li>Difficulty Cause and Effect Logic </li></ul><ul><li>Ability to Process, Organize, Retrieve, and Remember Information Often Impaired </li></ul><ul><li>Difficulty With Sensory Integration </li></ul>
    20. 20. FASD and Behaving <ul><li>Difficulty With Boundaries-Sense of Self </li></ul><ul><li>Attention Problems </li></ul><ul><li>Impulse Control or Regulation Problems </li></ul><ul><li>Perseveration-Difficulty ‘Changing Gears’ </li></ul>
    21. 21. Damage To Fetus Depends On: <ul><li>Maternal Nutrition </li></ul><ul><li>Mother’s Age at Gestation </li></ul><ul><li>Quantity Alcohol & Pattern of Drinking </li></ul><ul><li>Timing of Drinking in Relation Fetal Development </li></ul><ul><li>Genetic makeup of Fetus </li></ul>
    22. 22. Research Indicates: <ul><li>If Individuals Drink Or Take Drugs Before They Know They Are Pregnant They Can Protect Their Baby </li></ul><ul><ul><li>By Stopping Drinking And Drugging </li></ul></ul><ul><ul><li>By Eating Healthy Foods </li></ul></ul><ul><ul><li>By Taking Supplements-Folic Acid and Anti-Oxidant Vitamins May Have Beneficial Effect— New Research MotherRisk </li></ul></ul>
    23. 23. Adolescent & Adult Diagnosis Still Difficult <ul><li>Present Diagnostic Guidelines Still Relies: </li></ul><ul><li>On Facial Changes Most Prominent Between Ages 2- 11 </li></ul><ul><ul><li>These Disappear Become Less Prominent In Time </li></ul></ul><ul><li>On Confirmation of Maternal Drinking </li></ul><ul><ul><li>Difficult to Establish For Many Exposed Adults and Adolescents </li></ul></ul>
    24. 24. Why is this a Problem? <ul><li>Without Diagnosis No Possibility Of: </li></ul><ul><li>Intervention </li></ul><ul><li>Prevention </li></ul>Intervention Prevention Diagnosis
    25. 25. How Can We Prevent What We Do Not See? <ul><li>Recognition-Diagnosis-Intervention-Prevention </li></ul>Recognition Diagnosis Intervention Prevention
    26. 26. FASD Is Often Misdiagnosed Constant Frustration for Everyone <ul><li>For Individuals Who Suffer Disability </li></ul><ul><li>For Their Families </li></ul><ul><li>For Society </li></ul><ul><li>Lack Of Appropriate Services </li></ul><ul><li>and Supports </li></ul>
    27. 27. Individuals With FASD <ul><li>Have Challenging Behaviours & Difficulty in Learning </li></ul><ul><li>Perceived as Being Problems </li></ul><ul><li>Not Perceived as Having A Problem </li></ul>
    28. 28. Problems Functioning: School-Work <ul><li>Cognitive Problems </li></ul><ul><ul><li>Limited Listening Skills But Often Very Talkative So Other People Don’t Recognize </li></ul></ul><ul><ul><li>Inability To Follow Directions-More Than 1 At a Time </li></ul></ul><ul><ul><li>Does Not Learn From Mistakes </li></ul></ul><ul><ul><li>Does Not Generalize Learning </li></ul></ul>
    29. 29. Problems Functioning: School-Work <ul><li>Social Problems </li></ul><ul><ul><li>Easily Irritated </li></ul></ul><ul><ul><li>Socially Inappropriate Behaviors-Doesn’t Respond To Normal Social Cues </li></ul></ul><ul><ul><ul><li>Problems With Relationships </li></ul></ul></ul><ul><ul><li>Sleeping Problems-Up All Night-Sleep All Day </li></ul></ul><ul><ul><ul><li>Tends To Be Late, Absent </li></ul></ul></ul>
    30. 30. Challenging Behaviors <ul><li>Social Problems </li></ul><ul><ul><li>Possible Sexual Boundary Problems </li></ul></ul><ul><ul><li>Possible Problems With Confabulation-Lying Without Deception </li></ul></ul><ul><ul><li>Possible Problems With Concept of Ownership-Stealing Without Deception </li></ul></ul><ul><ul><li>Lack of Responsibility For Actions-Blames Others For Mistakes </li></ul></ul>
    31. 31. Problems Functioning <ul><li>Emotional Problems </li></ul><ul><ul><li>Confused, Distorted Thinking-Often Anxious </li></ul></ul><ul><ul><li>Dangerous, Unsafe Behaviors </li></ul></ul><ul><ul><li>Attention Problems-Distractibility </li></ul></ul><ul><ul><li>Impulsivity, Self Control </li></ul></ul><ul><ul><li>Anger Management Problems </li></ul></ul><ul><ul><li>Substance Abuse Problems </li></ul></ul>
    32. 32. 1992-6 Secondary Disability Study <ul><li>Ann Streissguth et al (1996) Followed 473 Individuals- FASD--Longitudinal Study </li></ul><ul><li>90% Mental Health Problems </li></ul><ul><li>60% Trouble with the Law </li></ul><ul><li>50% Confined Jail or Mental Hospital </li></ul><ul><li>50% Inappropriate Sexual Behaviour </li></ul><ul><li>30% Drug and Alcohol Problems </li></ul>
    33. 33. Spiralling Problems <ul><li>90% of Individuals With FASD Develop Secondary Disabilities in the Absence of Intervention Appropriate Levels of Support. </li></ul>
    34. 34. Layers of Trauma <ul><li>At the Core Neurological Problems– FASD, ADD/ ADHD, Specific Learning or Memory Disabilities </li></ul><ul><li>Other Layers: </li></ul><ul><li>First Layer: Attachment Disorder-Multiple Unstable Placements-Often Associated With Aggression </li></ul>
    35. 35. Layers of Trauma <ul><li>2 nd Layer: Post Traumatic Stress Disorder –Sexual, Physical Abuse, Witnessing Violence/Suicide </li></ul><ul><li>3 rd Layer: Their Own Substance Abuse-Self Medication </li></ul><ul><li>4 th Layer: Jail, Institutionalization, Social Abuse in Terms of Inappropriate Response To FASD Disability </li></ul>
    36. 36. Beliefs Dictate Behaviors <ul><li>Accurate Identification Of Etiology of FASD Important For Effective-Appropriate Interventions </li></ul><ul><li>Diagnosis And Subsequent Treatment That Ignores Organicity Of FASD Could Lead To Exacerbating The Behavioral Problems. </li></ul>
    37. 37. Misinterpretation Of Behaviors <ul><li>If Psychologists/Physicians Untrained </li></ul><ul><ul><li>Easy To Misdiagnose </li></ul></ul><ul><li>Social Workers-Adoptive Parents Untrained </li></ul><ul><ul><li>Easy Misinterpret Behaviors/Give Up </li></ul></ul><ul><li>Justice Professionals Untrained </li></ul><ul><ul><li>Easy To Punish Behaviors as Criminal </li></ul></ul><ul><li>Teachers/Employers Untrained </li></ul><ul><ul><li>Easy To Expel, to Fire or to Refuse to Hire </li></ul></ul>
    38. 38. Professional Training Essential <ul><li>If Professionals Untrained </li></ul><ul><ul><li>Easy To Unknowingly Perpetrate Administrative Violence On Individuals Whose Problem Behavior Is Result Of Disability Not Deviancy </li></ul></ul>
    39. 39. <ul><li>How Many People Are In Prison When They Simply Need Higher Levels of Support For Longer Times In Order To Work and Live Productive Lives? </li></ul>
    40. 40. Strategy-Start With Self and Peers First Stage <ul><li>Educate Self </li></ul><ul><ul><li>Each of Us is a Window To Understanding </li></ul></ul><ul><ul><ul><li>Teacher, Social Worker, Physician, Foster Parent, Nurse, Judge, Lawyer, Neighbor, Friend, Teacher Ass’t, Native Elder, Psychologist, Counselor, Youth Worker, RCMP, Journalist, Correction Officers </li></ul></ul></ul><ul><li>Educate Peers-Fellow Professionals, Workers, Friends </li></ul>
    41. 41. Second Stage <ul><li>Recognition and Referral: </li></ul><ul><li>Recognition Unacceptable Behaviour Result Of Untreated Disability </li></ul><ul><li>Recognition Huge Lag Between Cognitive & Physical Growth </li></ul><ul><li>Work To Change Practice: </li></ul><ul><li>Ability Levels Average, Low Average, Borderline-Normally Do Not Qualify For Special Service or Treatment </li></ul>
    42. 42. Developmental Impairments <ul><li>Change Eligibility Requirements: Use Adaptive Measures </li></ul><ul><li>Adaptive Behavior Measures Indicate Severe Developmental Impairments </li></ul><ul><li>Impairment Functional Living Skills: e.g. Comprehension, Communication </li></ul>
    43. 43. Timelines And FASD <ul><li>Individual With FASD Age 18 </li></ul><ul><li>Comprehension Age 6 </li></ul><ul><li>Money/Time Concepts Age 8 </li></ul><ul><li>Emotional Maturity Age 6 </li></ul><ul><li>Physical Maturity Age 18 </li></ul><ul><li>Reading Ability Age 16 </li></ul><ul><li>Social Skills Age 7 </li></ul><ul><li>Living Skills Age 11 </li></ul>
    44. 44. Timelines And FASD <ul><li>Individuals With Alcohol Related Disabilities May Not Usually Ready To Live Independently At 18 </li></ul><ul><li>Gradual Catch-Up Noted Young Adults With FASD </li></ul><ul><li>25-30 May Be More Realistic Timeline </li></ul><ul><li>18 Year Old With FASD Who Looks Like An Adult May Actually Be More Like A 8 or 9 Year Old On The Inside </li></ul>
    45. 45. Implications For Practice <ul><li>Social Workers </li></ul><ul><ul><li>Support Services Continue Beyond 18 For Young Adults With FASD </li></ul></ul><ul><li>Counsellors </li></ul><ul><ul><li>Cognitive Therapies Need To Be Changed </li></ul></ul><ul><ul><ul><li>Individuals With FASD Can Talk The Talk </li></ul></ul></ul><ul><ul><ul><li>Difficult To Walk The Walk Without Support </li></ul></ul></ul>
    46. 46. Implications For Intervention <ul><li>Correction Officers, Psychologists, Addictions Workers, Parents : </li></ul><ul><ul><li>Behaviour Modification Needs to Be Modified </li></ul></ul><ul><ul><ul><li>Reward/Praise Must Be Immediate or Soon </li></ul></ul></ul><ul><ul><li>Positive Try-Again Attitude (No Blame) </li></ul></ul><ul><ul><ul><li>‘ Falls’ Do Not Signify Lack of Desire </li></ul></ul></ul>
    47. 47. Individuals FASD Have Potential <ul><li>They Need Support To Use Their Abilities </li></ul><ul><ul><li>To Set Reasonable Goals For Self </li></ul></ul><ul><ul><li>To Manage Money </li></ul></ul><ul><ul><li>To Organize Time-Tape Schedule On Fridge </li></ul></ul><ul><ul><li>Some Need Support To Care For Themselves-Teach Proper Hygiene-Tape Schedule In Bathroom </li></ul></ul><ul><ul><li>To Care For Their Families-Mothers With FASD Need In-Home Coaching </li></ul></ul><ul><ul><li>To Understand Social Systems-Like Court </li></ul></ul>
    48. 48. Use Practical Aids <ul><li>Use Schedules-Simplified </li></ul><ul><li>Use Digital Clock </li></ul><ul><li>Break Down Tasks-Task Analysis </li></ul><ul><li>Use Pictures To Explain—i.e. Court System, Work </li></ul>
    49. 49. Use Practical Supports <ul><li>Teach Picture-Symbol System For Communication If Necessary </li></ul><ul><li>Use Role Plays, Contextual Learning </li></ul><ul><li>Teach the Use Of Calculators, Computers </li></ul><ul><li>Use Social Stories To Teach Behaviors </li></ul>
    50. 50. FASD & Sexual Issues <ul><li>Use Simplified Books With Pictures </li></ul><ul><li>Explain In Concrete Terms </li></ul><ul><li>Discuss Possibility Of Long-Term Birth Control Like Depo-Provera, IUD’s, Norplant- Because of Impulsivity </li></ul><ul><li>Teach About STD’s and Protection </li></ul><ul><li>Close Supervision and Structured Social Activities Late Teens and Twenties </li></ul>
    51. 51. We Can Change Outcome <ul><li>Primary Disability Can Not be Cured But We Can Change Outcome </li></ul><ul><li>Build On Strengths </li></ul><ul><li>With the Proper Diagnosis and Support, Individuals with FASD can Learn to Function </li></ul><ul><li>Prevent Or Heal Secondary Disabilities </li></ul>
    52. 52. Adapt Environment Instead Of Person <ul><li>If Someone Is Physically Challenged We Adapt or Modify Environment To Support Needs </li></ul><ul><li>If Someone Has Developmental Disability We Can Change Outcome By Providing Appropriate Environment To Support Needs </li></ul>
    53. 53. Research: Work and Housing <ul><li>Research Indicates Lack Of Appropriate Living & Working Environments-Lack of Appropriate Skill Training </li></ul><ul><li>Only 18% of Individuals FASD Lived Independently </li></ul><ul><li>Only 10% Able To Live Independently Without Employment Problems </li></ul>
    54. 54. Individuals FASD Can Learn <ul><li>Animal Studies-Functional Behaviour and Learning </li></ul><ul><li>Alcohol Exposed Chicks Look Normal </li></ul><ul><li>Failed The Detour Learning Test Day 1-3 </li></ul>Food Chicks Glass Day 4 Learned
    55. 55. Learning And FASD <ul><li>We Can Help Individuals With FASD Learn and Grow By Creating Environments In Which They Can </li></ul>
    56. 56. Turn Weaknesses To Strengths <ul><li>Perseveration Persistence </li></ul><ul><li>Hyperactivity Hyper-Energetic </li></ul><ul><li>Inflexibility Commitment </li></ul><ul><li>Daredevil Courage </li></ul><ul><li>Lack Boundaries Openness </li></ul><ul><li>Distorted Logic Unique Understanding </li></ul>
    57. 57. Weaknesses To Strengths <ul><li>Self-Centered Strong Sense of Self </li></ul><ul><li>Distorted Perception Rich Fantasy Life </li></ul><ul><li>Confabulation Great Storytelling </li></ul><ul><li>Oversensitivity Highly Sensitive </li></ul><ul><li>Impulsivity Spontaneity </li></ul>
    58. 58. Difference In Outcome <ul><li>Same Primary Disability </li></ul><ul><li>Prenatal Exposure To Alcohol </li></ul><ul><li>Assessment and Diagnosis </li></ul><ul><li>Appropriate School Interventions </li></ul><ul><li>Stable Home Life </li></ul>
    59. 59. FASD Is A Life-Long Disability <ul><li>Older Youth Like D.F. Who Are FASD Need: </li></ul><ul><li>Diagnosis </li></ul><ul><li>Team Work For Guidance-Relationships </li></ul><ul><li>Supportive Structures </li></ul><ul><li>Routines that become Habits </li></ul><ul><li>Consistency </li></ul><ul><li>Supervision </li></ul><ul><li>Opportunities To Learn And Work </li></ul><ul><ul><li>Sheltered Work-Job Coaches </li></ul></ul><ul><li>Assisted Independent Living </li></ul><ul><li>Therapeutic Interventions In and Out of Justice System </li></ul>
    60. 60. Every Person Is A Gift To Us From Creator
    61. 61. Each Of Them Has A Purpose
    62. 62. We Can Help Them Find That Purpose By Believing In Them