The Prevalence of FASD in a Maritime First Nation Community

1. The Prevalence of FASD in a Maritime First Nation Community Principal Researcher: Lori Vitale Cox Ph.D Diagnosing Physician: Dr. Michael Dickenson

2. Background Is FASD a Serious Health Issue in Canada? • Still No Normative National Data • Incidence U.S. FAS 1-3 per 1000 (1997) FASD 9-10 per 1000 (2001)

3. Prevalence Studies in Canadian First Nation Communities Northern BC FN 190/1000 Robinson et al 1987 Northern Manitoba FN 95/1000 Chudley et al 1997 No Prevalence Studies in First Nations Communities in Eastern Canada

4. Is FASD Health Issue in FN Communities in Maritimes? • Present Study Based on Data Collected in an Aboriginal Community in the Maritime Region of Eastern Canada • From January 1998 Until June of 1999 • Elementary School Population Grades 1-8 N=187

5. Introduction • Community-2500 People, 750 Families, 50% School Age or Younger • Band Operated Elementary School K-4 to Grade 8 • 267 children in Community School • 187 children Grade 1-Grade 8

6. School Population 1997-8 Grade Number of Children N=187 • Grade 1 27 • Grade 2 28 • Grade 3 22 • Grade 4 29 • Grade 5 32 • Grade 6 17 • Grade 7 19 • Grade 8 13

7. School and Community Problems Community Leaders Concerned: • High Rates of Youth Suicide • Behavior and Learning Problems of Youth in and Out of School • High Rates Delinquency, Alcohol and Inhalant Use • School Attrition 75% Before Gr. 12-Many Before Gr. 8

8. 1997-8 Series of Meetings • Parent and Service Professional Meetings • Working Committee Formed: • Principal • Coordinator Educational Psychology • Director Mental Health • Acting Director Education • Decision--Needs Assessment Research

9. Research-Community Based Driven by Community Members and Leaders • FN Ethical Principles Discussed First By Working Group-Later Wellness Committee • Respect Community Members Relationship to Research • Ensure Community Involvement • Ensure Sharing of Information • Use Knowledge To Help Community Members

10. Community Based Research • Results Presented to Band Council, Wellness Committee and General Public • Knowledge Gained Used To Improve Educational and Community System

11. Objective of Research • Determine Un-Met Needs (Physical, Social, Emotional, Spiritual) Interfering With Behavior and Learning • Suspicion FASD or Other Conditions Might Be Contributing Factors • Provide Basis for Appropriate Intervention • Determine Funding Requirements/Seek Appropriate Funding

12. Parents Perceptions of Problems 1998 Survey of Parents of School Children • 75 Surveys Handed Out-56 Returned • 75% Response Rate: 21% All School Families Question: What % of School Age Children Have Problems Related to Alcohol Use in the Community--FAS, Family Violence, Neglect, Sexual and Physical Abuse Response: 71% of Children Had Problems Related Family Alcohol Use

13. Method-Active Case Finding Children Selected for Assessment Through an Active Screening Process • Identify Those More Likely Than Others in the Sample Population to Be Affected • Lack Appropriate Screening Tools For FASD

14. Method Procedures Used In Diagnosing Children • Medicine Wheel Tools Developed for Screening • Medicine Wheel Student Index • Medicine Wheel Developmental History • Educational Psychology Assessment • Medical Examination-Diagnosis

15. Medicine Wheel Index Screening • MW Student Index Handed Out to Each of 22 Classroom Teachers • Teacher Perception Level of Children’s Particular Needs in 4 Domains • Cognitive • Social • Emotional • Physical

16. MW Index Screening Domains Cognitive • Academic (Numeracy, Literacy, Social Communication, General Ability) • Neurobehavioral (Short Attention Span, Hyperactivity, Impulsivity-Self-Regulation, Memory, Focus, Other) Social • Family Problems (Violence, Alcohol-Drug Use, Students Drug-Alcohol Use, Neglect, Physical Abuse, Sexual Abuse, Other) • Conduct Problems (Swearing, Fighting-Pushing, Out of Seat, Rudeness, Work Refusal, Bullying, Lateness, Attendance, Other)

17. MW Index Screening Domains Emotional • Aggressive, Timid, Depressed-sad, withdrawn, Anxious, Lies-steals- destroys things, Angry/Defiant, Talks of Suicide, Other Physical • Fine Motor Skills, Gross Motor Skills, Coordination, Vision, Hearing, Weight Problem, Speech (articulation), Other

18. MW Index Screening Problems Students Identified As Having Problems In One or More Domains Severe Enough To Interfere With Their Learning

19. MW Index Screening

20. Medicine Wheel Developmental History Tool- Parent Screening Semi-Structured Interview • Full History of the Children in Terms of the Physical, Social, Emotional and Mental-Developmental Domains • Details of Pre-peri-post Natal Periods. • Specific Questions About the Use of Alcohol and Drugs Including Nicotine

21. Parent Screening Questions About Other Factors-Co-Morbidities • Multiple Placements • Grief-Recent Suicide of Death in Family • History of Physical-Sexual Abuse • Linguistic Background • Genetic History of Family In Terms of LD • Medical History-Hospitalizations, Falls, Loss of Consciousness, Convulsions etc.

22. Layers of Trauma • Like Peeling an Onion-Layers of Trauma Affecting Leaning and Behavior • Affecting Children’s Ability to Learn How to Learn • From The Beginning The Purpose Wasn’t Just To Find FASD But to Help Change Outcome For Affected Children

23. Screening Tools Developed In Field • Basic--Like Net or Rake or Shovel • Developed For Specific Population and Purpose • Proven to Be Effective • Still In Use In Community • Simple to Use • Cost Effective, Practical

24. Screening Tools Developed • Medicine Wheel Index-Teacher Screen--15-25 Minutes • Medicine Wheel Dev’t History-Parent Screen-More Time Consuming • Minimum 45 Minutes-Natural History of Child and Family • Collaborative Relationship With Parents Important for Full Disclosure • Less Time Consuming & Costly Than Full Ed Psych Assessment and Diagnosis For All Children Identified By MW Index-Teacher Screen

25. Ed-Psychology Assessment Battery of Tests in Various Areas Ability-Weschler Scales, WISC-R, Raven’s Matrices, Goodenaugh Draw-a-Figure Language- Peabody Picture Vocabulary Test-PPVT, Guided Reading Levels Adaptive Behavior- Vineland Adaptive Behavior Scales Visual Motor Skills- Bender-Gestalt Visual Motor Integration Achievement-Wide Range Achievement Test-WRAT Attention and Behavior- Achenbach Child Behavior Check-List-Teacher Version-CBCL-T, Conners Parent and Teacher Short-Form-Conners PRS/TRS

26. Medical Examination-Diagnosis • 2 Diagnostic Clinics-June 1998- May 1999. • Dr. Mike Dickinson, Pediatrician • Consent Forms Signed By The Parents • CHN Nurses Record Height, Weight, Vision, Hearing • Researcher Prepared Case Report: • Teachers Report of Present Problems • Psycho-Ed Test Data • Developmental, Medical, Social, Pregnancy History • Babies Birth-Weight, Mom’s Age at Birth, Pre-Natal Exposures Etc.

27. Diagnostic Clinics • Measured Palpebral Fissures, Head Circumference, Evaluated Philtrum-Upper Lip • Checked for Other Minor Anomalies-Flattening of the Maxillary Area, Palmar Creases Etc • FAS Diagnosed If Clear Evidence of Growth Retardation, Small Palpebral Fissure Length, Changes in the Phyltrum/thin Upper Lip, Confirmation of Exposure to Alcohol During Gestation , and Brain Dysfunction in Terms of Developmental Delays, Intellectual Impairment, or Neuro-behavioral Abnormalities.

28. Diagnosis • FAE (PFAS) When Disclosure of Alcohol Consumption As Well As Evidence of One or Two of the Physical Anomalies And/or Growth Retardation Together With the CNS Dysfunction. • ARND As Recommended by IOM for Children Exposed to Alcohol in Utero and With Clear Evidence of Brain Dysfunction Not Caused by History or Genetics

29. Results-Diagnosable Medical Conditions

30. Prevalence Rates of FASD FAS= 3.74% 37/1000 PFAS= 9.09% 90/1000 ARND= 6.42% 64/1000 TOTAL FASD 19.25% 193/1000

31. Discussion • All Mothers Who Disclosed Alcohol Use Also Smoked Nicotine Cigarettes • All Mothers Who Drank, Drank In Binge Pattern • Most During The First Trimester Before They Knew They Were Pregnant • Most Could Not Remember Details of Quantities: ‘I Drank A Friday And Saturday Night…6-12 Beer A Night.. No More Than A 24…Enough To Feel Good’

32. Discussion Actual Prevalence Rates Likely Higher 19-20% • 3/10 Children Diagnosed As AD/HD Had Confirmed Exposure to Alcohol in Utero • Boy AD/HD Fraternal Twin Girl Diagnosed ARND • 2/10 Exposed to Cannabis • 5/10 Had Suspected-Unconfirmed Exposure • Disclosure Continues to Be Difficult for Mothers Because Social Implications for Themselves If Children Found to Have an Alcohol Related Disability.

33. Discussion • Also Canadian Standard Norms for Birth Weight and Head Size Significantly Lower Than in Aboriginal Communities • Implications for Diagnosis of FAS Because Growth Retardation Is Key Area in Diagnosis • May Be More Children in Sample Population With FAS Than Reported-These Children May Have Been Inaccurately Classified FAE-PFAS • Health Center Data Indicates Pre-Natal Exposures To Alcohol and/or Drugs Rising • In 2006-60% of Babies-Multiple Exposures-(Increase in Opiates)

34. Conclusion • Unexpected High Prevalence FASD • High Rate Cannot Be Generalized To The Larger Population • Actual Incidence May Be Higher Than Some Incidence Researchers Suggest • Results Challenge Research Assumption Abel(1994)

35. Abel’s Incidence Data • Abel Assumes FAS Readily Recognized and Diagnosed in Hospitals at Birth or Soon After • Using Data From a Number of Epidemiological Studies Of Obstetric Hospital Populations Worldwide • Abel (1999) Estimated Incidence at Less Than 1/1000

36. Abel’s Incidence Estimates • Abel States ‘..there is little evidence to support (the) assumption (that) FAS is underdiagnosed…. as a result of increased awareness of FAS among health care professionals, the possibility of FAS going unrecognized shortly after live birth seems unlikely.’ (1994)

37. Incidence Research • The Fallacy of This Argument Is Obvious From the High Number of Undiagnosed Individuals in Research Studies • For Instance Byrd (2004) Looks at Medical Records Population of 3,080,904 in US Correction System--only 1 Diagnosed Case of FAS • Incidence Should Be From 1540-28,036 Even Using Conservative Estimates Such As Abel’s • One Could Argue This Population Too Old to Have Been Identified at Birth

38. But FASD Still Invisible To Many Health Professionals • Present Study Children Born In Late 1980’s 1990’s • All Were Born at Large Regional Hospital Center-Less Than Hour Away By Car On Good Road • Mothers Received Pre-Natal Services-Many At Hospital • Not One of These Cases Diagnosed At Birth, Shortly After, Or For Years Until This Study

39. Low Incidence Estimates Abel’s Low Incidence Estimates Depend Upon Data That May Not Be At All Reliable • Physicians Still Un-trained--Unfamiliar With FASD Diagnosis • FASD Multi-disciplinary Diagnostic Teams Scarce • Diagnosis Of Most Of The Spectrum Of FASD Is Difficult At Birth

40. Good Incidence Data Essential • Based On Low Incidence Estimates Armstrong (1998) and Abel and Armstrong (1999) Conclude Concerns With FASD Are Socially Constructed ‘Panic’and Moral Crusade That Has More to Do With Getting Research Funds Than Scientific Findings • This Is Dangerous For Prevention--We Need Good Incidence Data ASAP

41. This Study Also Indicates Problem With FASD Diagnosis In General Population-They Receive Services at Same Hospital Center • Using Incidence Estimate 9-10/1000—7-8,000 People in New Brunswick FASD • Most Undiagnosed-Still No Hospital Multidisciplinary Diagnostic Team In Maritimes • Proper Diagnosis of Fetal Alcohol Spectrum Disorders Is Not Accessible in Much of Eastern Canada

42. FASD Is Not Just an Aboriginal Problem • Problem Anywhere That Women of Childbearing Age Drink--One of the Groups at Highest Risk for the Disability Are Young University Women • High Prevalence Rates in Study Can Not Be Generalized to Larger Population but They Point up Serious Flaw in Medical Health Delivery System in Region in Terms of FASD Diagnosis, Prevention Intervention Services • Flaw That Has Serious Consequences for Individuals Who Suffer Disability, for Families+ Communities

43. Individuals With FASD Perceived as Being Problems • Instead of Being Perceived of As Having A Problem

44. Secondary Problems • 90% Individuals Develop Secondary Problems-Disabilities--School Problems, Mental Health Disorders, Trouble With the Law, Addictions, Etc

45. Spiralling Problems-RCMP Stats

46. Spiralling Problems • Is FASD Fuelling this Spiral? Keeping People From Achieving Health and Well-Being. • What Can We Do To Change This?

47. Diagnosis Means Responsibility

48. Wellness Objectives-Diagnosis, Intervention, Prevention • Prevent Secondary Problems--Provide Interventions and Support at School and Home • Prevent Further Incidence • Provide Regular Diagnostic Services

49. Protective Factors • Early Diagnosis • Stable Home Life • Supportive Interventions School

50. School Initiative • Implemented-1998-9 Elementary School • Educational Funding From INAC-Indian and Northern Affairs • Change Outcome by Providing Supportive School Environment For Youth With FASD and Other Developmental Disorders • To Develop Children’s Gifts as Well as Their Academic Skills • To Create A Culturally Sensitive Model of Intervention