Languages of Assessment: Working with Parents with Special Needs

1. Languages of Assessment:Working with Parents with Special Needs Christine Loock, MD, FRCPC Associate Professor, Pediatrics, UBC May 29, 2008 Department of Pediatrics University of British Columbia

2. Goal:

3. Objectives • To review core concepts of child development • To share some pearls from my practice with FASD and other congenital conditions • To recognize that adults don’t skip childhood • To develop skills to work more effectively with parents who may also have special needs

4. Core Concepts of Development • Child development is a foundation for population health and longevity as well as the basis for prosperous and sustainable societies. • The interactive influences of genes and environment shape the development of brain structure and function. • Adverse events, including illnesses, toxic exposures and stress during gestation and early childhood are associated with persistent effects which can lead to lifelong problems in learning, behavior, physical and mental health. • Creating the right conditions for early childhood development is likely to be more effective and less costly than addressing problems later. Jack P. Shonkoff, M.D., et al, The Science of Early Childhood Development: Closing the Gap Between What We Know and What We Do www.developingchild.net

5. Scope of Developmental Pediatric Practice

6. Scope of my Practice includes Youth & Adults Social Services

7. What is FAS? • Growth deficiency • Specific facial anomalies • Brain dysfunction (+/- structural) • Prenatal Alcohol Exposure National Geographic ~1992) Ireland

8. FASD is “international”! FASDisalso “colour blind”!

9. Prevalence • Full FAS: 0.33 – 2 per 1000 [~1:500] FAS (Italy): 4 -7. 4 per 1000) [~1:200] • FASD: 9 per 1000 [1:100] FASD (Italy): 20-40 per 1000 [3:100] • FASD (BC) 190 per 1000 [19/100]1986 (Robinson, Conry, et al) [1:5]

10. Why make a diagnosis of FAS/FASD? • It is a diagnosis for two. The diagnosis of the affected person at any age can lead to intervention with the birth mother. • It alerts the family, educators, physicians, social system workers, courts, etc to brain differences that need to be understood when working with the affected person to effect changes in behavior. • It is not a LABEL!

11. “Labels” vs. Diagnosis Reserved for Jam Jars and Beverage Alcohol Blueprint for interventions

12. FAS History (abbreviated) • Biblical: Samson • Greek and Roman • 18th-19th Century • England • 20th Century • 1960s: France • 1970s: USA (Seattle) • 1980s: Sweden & Canada (British Columbia) • 1990s: England • 21st Century • South Africa, Italy, Russia, Ukraine, Finland consortium • UK: 2006(Oxford);2007(BMA) William Hogarth (1697 - 1764)Gin Lane

13. Goddard & Eugenics (or was it really FASD?) A Study in the Heredity of Feeble-Mindedness, 1912 The “Kallikak” Family: Greek καλός and κακός

14. Art History Toulouse-Lautrec ~1895

15. Who is responsible?In Washington State, 80 birth mothers of children with FAS were studied.Astley, Bailey, Talbot, Clarren, 2000 • Almost universal experience with severe abuse • Multiple mental health disorders • Limited social support • Half estimated to have FASD themselves

16. Remember FASD is an “umbrella” term. FETAL ALCOHOL SPECTRUM DISORDERFetal Alcohol Syndrome (FAS) • Growth • Facial features • Brain • Exposure Fetal Alcohol Effects (FAE) = Partial FAS + Alcohol Related Neurodevelopmental Disorder (ARND)

17. Canadian Guidelines: Diagnosis The 4 DIGIT Approach CMAJ March1,2005 (Chudley, Conry, Cook, Loock, Rosales, Leblanc)

18. Brain e.g.: (note that imaging is currently not a useful clinical tool) Shape Distortion in Frontal and Parietal Lobes Gray Matter Density Increase Sowell et al., 2001a Sowell et al., 2001b

19. Functional Domains of Brain Dysfunction • Cognition* • Academic Achievement • Executive Functioning/Abstract Reasoning* • Memory* • Communication* • Adaptive Behaviour and Social Skills* • Attention and activity level* • Neurologic “soft signs” (gross motor/fine motor/oral motor/sensory abnormalities) • *Most frequently showing significant impairment • (From Asante Centre, Youth Justice Project, 2005)

20. “ALARM”*s • Adaptive Behavior • Language • Attention • Reasoning • Memory * *From Loock “LLAMA”, 1993; Conry & Fast 2000

21. Adaptive Behavior“Behavior that is effective in meeting the natural and social demands of one’s environment” • The degree to which individuals are able to function and maintain themselves independently • The degree to which they meet satisfactorily the culturally imposed demands of personal and social responsibility • In FASD, “secondary disabilities” are, in part, the result of a failure to develop normal adaptive skills

22. Communication Self-Care Home living Social Skills Community Use Self-direction Health and Safety Functional Academics Leisure Work Some Adaptive Skills

23. Language“Don’t teach them fast, teach them slow” • Slow to process language • Don’t understand the language • Concrete and literal • Acquiescence • Yielding to leading questions • Shifting in response to negative feedback

24. Attention • About 60% of individuals with FASD have “attention problems”. • Distractibility, impulsivity Streissguth et al., 1996

25. Reasoning • Connect cause and effect - Seeming inability to • Hypothesize a chain of events • Link behaviour and consequence • Anticipate consequences • Seeming inability to learn from experience • Learns the exception rather than the rule • Difficulty generalizing from one situation to another • Easily led, victimized

26. Memory • Memory deficits • Poor concept of time and sequencing • Confabulation • False confessions

27. Diagnosis in Youth and Adults Growing up with FAS

28. Why a diagnosis may be harder to obtain in older individuals: • Recognition of full FAS may less likely in teens and adults due to pubertal growth and maturation. • The history of alcohol exposure might be harder to get. • Other factors leading to brain dysfunction might obscure the initiating role of alcohol (Addiction & Mental Health issues). • But the case definition for FASD does not change! • And, the method of evaluation of the brain is the same in this group as in younger children (and may be even better evaluated.) • It comes down to services & loss of continuity of care! • And not enough of us “grow up” with our patients.

29. Wisdom of Practice:Where are Adults with FASD Today And where do most of them currently access services?

30. Secondary Disabilities Are all these really “secondary”? • Mental health concerns (95%) • Disrupted school experience (60%) • Trouble with the law (~60%) • Alcohol and drug issues (35%) • Dependent Living (80-100%) • Employment problems (70-90%) • Inappropriate Sexual Behaviors(50%) • Unplanned pregnancy & parenting concerns • Institutionalization • Homelessness • Premature Death Adapted from “Secondary Disabilities” Study on FAS/FAE Streissguth et al,1996

31. Having higher IQ (e.g. “FAE”) often means greater difficulties for some areas!

32. Special Needs and the Law Special needs CIC are more likely to be in jail than to graduate!

33. “CYSN” Supporting the Transition from Adolescent to Adult: based on functional needs extending the age of support from birth -24 years for children & youth with special needs. RCY Judge Mary Ellen Turpel-Lafond

34. Wisdom of Practice:Where are Adults with FASD Today And what do they tell us?

35. Listening to our [clients’] parents • Be predictable. • Understand me. • Don’t judge me. • Don’t focus on my past behavior. • Be respectful of my story. • Simplify your language • Avoid using “million $ words” • Give me a menu (vs open ended questions) • Avoid double negatives [ (-) x (-) = (+)] • Treat me like a real person. • “FAS is what I have, not who I am”.

36. What I’ve learned in 25 years: • Both nature and nurture are important. • The interactive influences of genes and experience shape the architecture of the developing brain. • The active ingredient is the “serve and return” nature of children’s engagement in relationships with caregivers, family & community. – Shonkoff et al • The fetus is not a little adult [homunculus] ! -Friedman • Exposures in pregnancy (like alcohol) can have profound effects. • Dose, timing, adsorption, and adversity/stress also influence effects. • Individual differencesto susceptibility exist. -McGillivray • Even twins can be discordant. [Fraternal > Identical]. • Incidences of isolated anomalies vary across populations but syndromes are not “racist”. (e.g. FASD is worldwide) • “Acquired conditions can be superimposed on genetic traits” as a co-morbid disorders. (Down S, schizophrenia + FASD))

37. What I’ve learned in 25 years: • Outcome of assessment should stress activity & participation (inclusion & friendships) more than disease classification - O’Donnell • Adaptive and executive function are better indicators VS IQ level alone -Conry • Diagnoses are not LABELS and may befor more than one. -Loock • Diagnosis can leads to better information on prognosis, recurrence risk and effective prevention! • Most children “grow up” to become adults. - Loock • Adults don’t skip childhood • Andadults with disabilities (like FASD) do not outgrow their condition. • Most adults with FASD have not been diagnosed, but diagnosis is possible, meaningful and sometimes necessary.

38. Pearls I’ve saved over 30 years: • “Our start in life has a profound impact on our final outcome.” • Dr Geoff Robinson, 1986-2001 • “Poor children have poorer health.” “The rate of childhood disability [is] over twice as high among children from poor families compared to rich families.” • Dr Chandra P Shah, Public Health and Preventative Medicine in Canada, University of Toronto, 1986 • “You will never really understand child development until you have your own children or do this for a very long time.” • Dr Philip Porter, Harvard Medical School, 1978 • Never say “If this were my child….” • Dr Sterling Clarren, Univ.of Washington, 1981

39. On being a parent "You will be the parent you are in part because you are a [ ____ ], and you will be the [ ____ ] you are in part because of your children. Your career will shape their childhood years, and they, in turn, will shape you as a [ ____ ]." • Dr Perri Klass, Taking Care of Your Own (1992) You may not be a better [ ____ ], but you will be a more humble one. • Dr Chris Loock, mother of 3 = your profession