1. Foetal Alcohol SPECTRUM DISORDER (FASD) and the NT Jennifer Delima MBBS, MHA, AFCHSE, FACRRM, FRACGP, Grad. Dip. Forensic Med Nov 2010

4. Alcohol consumption- trends 62  85- 90% population report alcohol intake * 13  20% “At risk” intake* Increase females > males ** 6.2% 1995 10.3% 11.7% 2004/5 15.2% Teens 14-19yrs 2004 25% 2005 50% *** Girls drinking spirits; Boys drinking beer ~ 50% pregnancies are unplanned, occur in social context ABS 2006; AIHW 2005; Census 2004/5

5. Alcohol = poison + teratogen Poison: a substance that can cause severe distress or death if ingested Teratogen: produces defects and malformations in exposed foetuses - effect NOT passed on through future generations. ≠ cell growth, migration, neuro-chemical development *

6. The link with FASD.... Has been recognised since circa 800 BC – Book of Judges “you shall conceive and bear a son – take no wine or strong drink….” 130 AD Gellius “ if a drunken man get a child, it will never likely have a good brain” 1627 AD Francis Bacon “if the mother …drink wine or strong drink...it endangereth the child to become lunatic or of imperfect memory”

7. …to now -our time…. 1972 Drs Jones and Smith in Seattle Relationship between foetus and alcohol exposure, describing the effects : Facial features, Low Birth weight, Premature birth, CNS damage  Foetal Alcohol Syndrome

8. Alcohol and foetus… High foetal BAC – placental cross - foetal metabolism limited - ? High amniotic concentration and duration of effect BUT NO identified threshold of exposure ? Dose –response relationship Maternal influencing factors – genetics - size - nutrition Other modifiers: Substances Food associations Prof R Harding – Monash University

9. NOT a Pathognomonic syndrome Description of a spectrum of poison’s effect… FAS Physical abnormality Neurologic brain disorder Learning disability Behavioural difficulties FASD Mental disability Includes FAS FAE ARND ARBD PFAS SE

10. Impacts … SPECTRUM OF DISORDER – mild to severe with LIFELONG effects for the INDIVIDUAL, FAMILY AND COMMUNITY Primary disabilities : FAS Other physical abnormalities Secondary disabilities : FASD Behavioural, Learning, Cognition, Consequencing Difficult abstract concepts,

11. Individual ‘Primary’ effects PHYSICAL EFFECTS OF FAS : Growth retardation – height, weight 98% FAS facies 95% Mental and motor retardation 89% Brain abnormalities: microcephaly, 84% Other congenital abnormalities: cardiac, skeletal, vascular, renal, cleft palate, ocular Prof. H Loser University Children’s Clinic, Munster, Germany Prof. E Elliott,Westmead Children’s Hospital, University Sydney, NSW

12. Individual ‘Secondary’ effects NEURO-BEHAVIOURAL FASD EFFECTS : Low average IQ Hyperactive, Attention problems Team difficulties, Abnormal eating behaviours, Inappropriate sexual behaviour Developmental delays Speech / language difficulties Concept / abstract thought difficulties Dr A Streissguth University Washington Prof. E. Elliott Westmead Children’s Hospital, Sydney

13. Family / Community effects… FAMILY ‘High maintenance’ Poor learning Little discipline Poor feeding Poor language Poor independence COMMUNITY Foster care Poor education 60% Unemployment 80% Mental health 90% Justice 60% AOD 30% Impulsive relationships- sexuality, vulnerability- 50% Long term care > 21 years 90%

14. We also know that…. IF….. Community and professional awareness Early screening Timely referral and accurate diagnosis Early intervention with Appropriate remediation Long-term individual, family and community support ….. … HARM IS MINIMISED Studies described from Canada, USA, Germany experience

15. …BUT… 1.Alcohol is synonymous with Australian culture 2.NO Diagnostic Centres this side of the world…

17. …BUT… 1.Alcohol is synonymous with Australian culture 2.NO Diagnostic Centres this side of the world 3.FAS /FASD already present as well as yet to be 4.Diagnostic standards not available across ethnicities 5.NT - remote compared to rest Australia 6.Geographical distances within NT 7.Vernacular for assessment 8.Family dislocation / travel issues 9.Limited resources 10.Lack of specifically trained FASD experts….. 11.Need awareness of other differential diagnoses

18. How do we overcome this? 1.Awareness of the entity 2.Educating our colleagues, community 3.Screening those at risk** – Mothers Neonates – FAS, suckling probs etc Infants, children –growth defic etc School kids – learning difficulties etc Adolescents – behavioural probs etc Adults – AOD, justice, employ probs

19. Possible FASD Screening tools… 1. Maternal Hx of alcohol and other drug use- √ 2.Neonatal meconium - √ ? 3.Facial Dysmorphology - xxx 4.Child Behaviour Checklist – modified ?? 5.Psychometric assessments- FABS ?? 6.Medicine Wheel ‘Holistic’ Tool - √ 7. Probation Officer Tool- √

20. However….. This is a SPECTRUM of disorder…. Needs correct evaluation ….the correct ‘diagnosis’ For the individual ≠ stigmatise, alienate, shame The mother ≠ blame, shame The family ≠ stigmatise, shame The community…. ≠ dis-empower, shame NO poorly targeted, and incorrect diagnosis Referral for assessment DOES NOT = Diagnosis

21. Take home plea…. A society wide issue Needs community education that crosses all cultures, economic backgrounds educational backgrounds Reaching out to our sexually active young

22. Thank you!