Changing Expectations: Working together to support the individual with FASD

1. Changing Expectations:Working together to support the individual with FASD Dr. Karen Baker, Psychologist Regional Support Associates

2. It might be FASD if…. • Peter breaks into a house and gets caught eating the chocolate cake from the fridge while watching TV

3. It might be FASD if…. • Matt “borrows” his father’s car and gets involved in a low speed chase from the police and drives into a building and then runs (he doesn’t have a license)

4. It might be FASD if…. • Cindy is always late or misses meetings with her CAS worker

5. It might be FASD if…. • Kristy’s parents go bankrupt paying off her cell phone and internet usage bills

6. Facts • Estimated 1% of population have FAS • 3 – 5 times more have FASD usually undiagnosed • FASD largest incidence of birth defects • Estimated 50% of offenders have undiagnosed FASD • Each individual with FASD costs the taxpayer approximately $1.5 million in his/her lifetime • In Canada total cost for all FASD = $600 billion over a lifetime

7. Terminology Fetal Alcohol Spectrum Disorder • Fetal Alcohol Syndrome • Partial Fetal Alcohol Syndrome • Alcohol-Related Neurodevelopmental Disorder (ARND) • Alcohol-Related Birth Defects • Static Encephalopathy

8. FAS diagnostic criteria • Confirmed maternal alcohol exposure • Facial anomalies • Growth retardation • Central nervous system neurodevelopmental abnormalities FAS without confirmed maternal drinking B, C & D

9. Diagnostic features • Low birth weight • Decelerating weight (not due to nutrition) • Disproportional low weight to height ratio • Decreased cranial size at birth • Structural brain abnormalities • Facial features • Thin lip, smooth philtrum, short palpebral fissures (eyes), flat mid face

11. Partial FAS • Confirmed maternal alcohol exposure • Facial anomalies • Growth retardation Or • CNS Neurodevelopmental Abnormalities Or E. Complex behaviour/cognitive abnormalities

12. Alcohol-Related Birth DefectsARND • Confirmed maternal drinking • Congenital abnormalities • Heart • Kidneys • Skeletal • Ocular • Auditory • Other

13. ARND: Alcohol-Related Neurodevelopmental disorder A. Confirmed maternal drinking Presence of B or C or both B.CNS Neurodevelopmental abnormalities C. Complex pattern of behaviour or cognitive abnormalities that are inconsistent with developmental level and cannot be explained by familial background or environment alone.

14. Confirmed maternal drinking Pattern of excessive alcohol intake characterized by regular intake or heavy episodic drinking - frequent episodes of intoxication - tolerance or withdrawal -social problems related to drinking -legal problems related to drinking -medical problems related to drinking -risky behaviour while drinking

15. Complicating factors • Mother may be in abusive situation • Smoking • Other drug use • Poor nutrition • Poor hygiene

16. After birth • Possibility of • Neglect • Abuse • Poor nutrition • Lack of stimulation • Attachment problems

17. Protective factors • Early diagnosis • Caring environment • Early intervention • Continual and appropriate educational supports • Supports for transitions • Identification of individual strengths and needs

18. Barriers to Assessment • Limited capacity across the country • Isolated areas • Not enough trained professionals with respect to FAS • History often difficult to obtain • Maternal drinking often difficult to confirm • Lack of birth records • Assessment of adults

19. FASD is Brain Damage There is no cure.

21. From Won’t Stopping behaviour Behaviour modification Changing people Is a problem To Can’t Preventing problems Modeling & visual cues Changing environment Has a problem Changing Attitudes: a professional shift:

23. FAS ARND Clinically suspect but appear normal Normal, but never reach their potential Adapted from Streissguth FAS – only the tip of the iceberg

24. What you see is not what you get! • IQ can range from severely disabled to “normal” • Adaptive functioning severely impaired • Have often been diagnosed with other disorders • Looks and sounds smart – acts disabled • Appear more competent than they are • Others overestimate ability • =Unrealistic expectations

25. Variable impairments • Pattern and level of prenatal exposure create unique patterns of impairments and strengths • No one defining characteristic • Wide range of learning disabilities • Diverse needs

26. Up to 80% have a mental health disorder • Streissguth, et al., 1996

27. Secondary Disabilities • Mental health problems • Disrupted school experiences • Easily victimized • Trouble with the law • Inappropriate sexual behaviour • Alcohol and drug problems • Problems with employment and living independently

28. Mental Health Issues 94% in secondary disabilities study had mental health issues (FASEout project 2006: www.faseout.ca) • FASD might not be considered or recognized – it’s not an official “mental health diagnosis” - often does not receive attention by mental health workers • Even when FASD is recognized, another diagnosis is often used in order to get reimbursement for treatment or services

29. Possibility of Misdiagnosis • Individuals may have undiagnosed or misdiagnosed mental health disorders • Individuals may be diagnosed with a mental health disorder without closely examining the total picture; FASD can look like many other mental health diagnoses • Adults may have many other disorders that come from living with FASD without support • (Dubovsky, 2002)

30. Information processing differences Regulation of emotion Memory (esp. short-term) Abstract reasoning Predicting Cause and effect Generalizing Flow-through memory Self-monitoring Poor sense of self Can “talk the talk but not walk the walk” Short attention span Time concepts transitions Behavioural profileDifficulty with Executive Functions!

31. Other Issues • Sensory sensitivities • Sensory perceptual integration • Poor eye hand coordination • Difficulty learning basic skills • Motor control

32. Social difficulties • Poor sense of time • Unpredictable behaviour • Spotty employment record • Substance abuse • Poor understanding of impairments • Want to appear “normal” • Unrealistic goals • Vulnerable • Others overestimate ability • Unrealistic expectations

33. Communication • Good expressive language • Poor comprehension • Confabulation ****

34. A.L.A.R.M. • A – Adaptive behaviour • Weak life skills, difficulty meeting expectations • L – Language • Good expressive language with poor comprehension • A – Attention • Impulsive, limited concentration • R – Reasoning • Inappropriate reactions. Difficulty linking action and consequence • M – Memory • Weak short term or working memory, poor memory for details

35. Hidden Strengths!!!! • Persistence and commitment in low stress situations • Succeed in structured situations • Learn effectively hands-on • Can be loyal and kind • Strong visual memory • Good verbal fluency • Creativity • High energy level • Athletic skills in individual sports

36. Early childhood • “difficult child” • Not bonding • Hypersensitive • Delayed milestones • Poor sleep/wake pattern • Difficulty with transitions • Poor receptive language skills • Lack of stranger anxiety

37. Typical 5 yr old Goes to school Follow 3 instructions Interactive, cooperative play Share Take turns Deb Evansen: Minnesota organization on Fetal Alcohol syndrome (www.mofas.org) FAS: 5 yrs going on 2 Take naps Follow one instruction Help mommy Sit still for 5-10 minutes Parallel play Very active “my way or no way” Behavioural Expectations: age 5

38. Middle Childhood • Poor judgment • Difficulty following instructions • Weak receptive language skills • No sense of personal space • No stranger anxiety • Gullible / no fear • Active and impulsive • Do not learn from punishment • Can’t generalize rules • “10 second kids in a one second world”

39. Typical child Answer abstract questions Gets along with others Solve problems Learn inferentially Physical stamina Academics ok Able to generalize FAS: 10 going on 6 Learn by doing Mirror, echo words and behaviours Supervised, structured play Learn from modeled problem solving Easily fatigued by mental work (MOFAS) Behavioural Expectations: age 10

40. Supports – Childhood • Lots of love!!!!! • Avoid unstructured time • Direct supervision 24/7 • Visual schedule for daily activities • Be aware of sensory sensitivities • Concrete rules • Model social skills • Teach good habits • Keep bedrooms and classrooms low stim • May not respond to traditional teaching

41. Things that don’t work • Star charts • Time out • Spanking • Taking things away • Bribes • Rewards

42. Adolescence • Difficulty organizing tasks and materials • Social problems • Auditory processing problems • May not respond to traditional teaching methods • Difficulty following multiple directions • May “melt down” due to sensory overload • Act out in frustration when don’t understand

43. Adolescence • Lying and stealing behaviours • Easily manipulated by negative peer groups • Faulty logic / fails to predict consequences • Does not learn from experience • Seems to show little remorse • Can’t “walk the walk” • Supervision needs similar to preschooler

44. Typical 18 yr old On the verge of independence Graduate from HS Maintain a job Developing life plan Beginning to be responsible with money Organize Adapted from MOFAS FAS: 18 going on 10 Needs structure and guidance Limited choice of activities In the “here and now” Needs adults to get organized Gets an allowance Giggles, curiosity, frustration Behavioural expectations: age 18

45. Supports: adolescents • Unconditional love! • Remember to think about developmental age, not chronological age • Direct supervision, structure, routine! • Check where going, who with etc. • Remember peers can be great risk • Praise good choices or attempts • Teach good habits • Model appropriate behaviour • Provide experiences that use their strengths

46. Things that don’t work • All the things that didn’t work with children • Contracts • Missing out on important events as punishment • Jail time • Reducing structure to increase independence • Reduce structure because doing well

47. Adults • Have often been diagnosed with other disorders • Appear more competent than they are • Looks and sounds smart – acts disabled • Unrealistic / poor judgment • Lacks self direction/control/discipline • Memory deficits • Unable to cope with day to day living • First choice is only choice • May be volatile

48. Adults (2) • Social difficulties • Poor sense of time • Unpredictable behaviour • Spotty employment record • Substance abuse • Poor understanding of impairments • Want to appear “normal” • Unrealistic goals • Vulnerable • Others overestimate ability • Unrealistic expectations

49. 8 magic keys for developing successful interventions • Be concrete • Consistency • Repetition • Routine • Simplicity: keep it short and sweet • Be specific: say exactly what you mean • Structure • Supervision • From fascenter.samhsa.gov

50. SCREAMS: 7 Secrets to Success • Structure • Cues • Role models • Environment • Attitude • Medications • Supervision ( from Teresa Kellerman fasstar.com)