Moving Ahead in the Assessment and Diagnosis of FASD

1. Moving Ahead in the Assessment and Diagnosis of FASD Christine Lilley, PhD Registered Psychologist Sunny Hill Health Centre for Children Vancouver, BC

2. Outline • Review of diagnostic issues • Functional assessment -what do you know? -what do you want to know?

3. The CDBC Network Stands for ‘Complex Developmental/Behavioural Conditions’ Created in 2005 to provide assessments of FASD and other conditions

4. Organization CDBC/BCAAN Dr. Maureen O’Donnell, Medical Director Karen Kalynchuk, Program Director CDBC Complex Developmental Behavioural Conditions Dr. Nancy Lanphear, Clinical Director BCAAN BC Autism Assessment Network Dr. Steve Wellington, Clinical Director FASD Fetal Alcohol Spectrum Disorder CCY/C3Y Complex Child and Youth

5. Organization PHSA Maureen O’Donnell, Medical Director Karen Kalynchuk, Program Director Vancouver Island Health Authority VIHA Phyllis Straathof Regional Manager Vancouver Coastal Health Authority SHHC Diane Bissinden Regional Manager Interior Health Authority ICAAN Randy James Regional Manager Northern Health Authority Sharon Davalovsky Regional Manager Fraser Health Authority FHAN Trish Salisbury Regional Manager

6. Diagnosis In FASD, the two key questions are: What is the evidence that this person has a brain-based disability? What is the evidence that this person was exposed to alcohol? If there is convincing evidence in both of these areas, the person will be given an FASD diagnosis

7. Diagnosis: What kind of evidence are we looking for? What is the evidence that this person has a brain-based disability? Poor performance on tests of brain skills like memory, compared to other children of the same age Low ratings of real life skills from parents and teachers, compared to other children of the same age Seizures and other physical signs of brain difference What about brain scans? Not helpful yet, but maybe in the future

8. Diagnosis: What kind of evidence are we looking for? What is the evidence that this person was exposed to alcohol? -maternal report -records -observer report

9. What determines which FASD diagnosis is given? The presence of physical features This may tell us something about our confidence that alcohol is the cause, but tells us nothing about the child’s functioning

10. The Fetal Alcohol Spectrum Fetal Alcohol Spectrum Disorders (FASDs) include: FAS pFAS ARND Near misses include: Static Encephalopathy, Alcohol Exposure Unknown Neurobehaviour Disorder, Alcohol Exposed

11. What determines which FASD diagnosis is given?

12. What determines which near miss diagnosis is given?

13. What do the numbers mean?

14. What do the numbers mean? 4=Completely convincing evidence 3=Some evidence, convincing enough 2=Some evidence, not convincing enough 1=No evidence

15. Practice moving from numbers to diagnosis 1433 1232 1233 4441 3323 4141

16. Fetal Alcohol Syndrome (FAS) Children with this diagnosis have all three of the features associated with prenatal alcohol exposure – (1) growth impairment, (2) characteristic facial features, and (3) severe learning and behaviour problems. This is the only fetal alcohol spectrum diagnosis that can be made without a confirmed history of alcohol exposure, because it is unlikely that all three would occur together for any other reason.

17. Partial Fetal Alcohol Syndrome (pFAS) Children with this diagnosis have (1) characteristic facial features AND (2) severe learning and behaviour problems, as well as a confirmed history of alcohol exposure.

18. Alcohol Related Neurodevelopmental Disorder (ARND) Children with this diagnosis do not have growth impairment or the characteristic facial features of prenatal alcohol exposure but do have severe learning and behaviour problems, as well as a confirmed history of alcohol exposure. Children with this diagnosis may be just as disabled as children with the above two diagnoses. In fact, some evidence suggests that they have worse outcomes, probably because it is more difficult to get people to believe that their problems are real.

19. What if there isn’t enough evidence? The term Neurobehavioural Disorder, Alcohol Exposedmay be used when there is: Evidence of prenatal alcohol exposure BUT Not enough evidence that the child has a brain-based disability

20. What if there isn’t enough evidence? The term Static Encephalopathy, Alcohol Exposure Unknownmay be used when there is: Evidence that the child has a brain-based disability BUT Not enough evidence of prenatal alcohol exposure

21. Diagnosis vs. Designation The health care system makes diagnoses; the school system makes designations.

22. Diagnosis vs. Designation -there is no list of medical diagnoses which are or are not ‘acceptable’ as chronic health conditions (although the definition states specifically that FASDs are acceptable, assuming that the criteria of functional impairment is met)

23. Diagnosis vs. Designation -in the fields of medicine and child development, we often encounter children who have functional difficulties similar to those of children with FASD with no known cause or with several possible causes that are not conclusively proven to relate to the difficulties that the child is having -e.g. developmental concerns related to prematurity

24. Diagnosis vs. Designation We often feel confident enough to say that the child has amedical/health condition without being able to give a formal diagnosis. This has led to the evolution of informal diagnoses, which do not imply the use of formal diagnostic rules. Informal diagnoses are attempts to convey that these problems are of the same type or on the same scale as disorders such as FASD but without formal diagnostic criteria.

25. Common informal diagnoses (without diagnostic rules) • Complex developmental and behavioural condition • Complex child and youth • Neurodevelopmental disorder • Brain-based disability They may be seen in combination with a list of possible causes “related to prematurity, birth trauma, and malnutrition.”

26. New Directions (under discussion) The Ministry of Education would like us to get away from referring to designation labels in our reports. They assure us that this is not necessary. Please be aware that if we don’t use the actual words “Chronic Health Impairment” in a report, it does not mean we don’t think the child belongs in that category.

27. Moving forward: Using assessment data to customize a student’s educational program

28. Diagnostic Rules for the Brain Probable brain dysfunction is defined as being in the bottom 2 % of the population (or having a highly uneven profile) in at least 3 of 8 areas

29. 8 Brain Domains • Cognition (Psychologist) • Academic Achievement (Psychologist) • Memory (Psychologist) • Attention/Activity Level (Psychologist) • Executive Function (Psychologist) • Adaptive Behaviour (Psychologist) • Sensory/Motor (OT) • Communication (SLP)

30. Common presentations • Intellectual disability ( a significant minority of children with FASD) • Borderline, Low Average, or Average abilities with a set of processing problems which may affect attention, executive function (judgment), high level language, memory, academic achievement, fine motor skills, sensory integration • Adaptive skills are usually poor no matter what the child’s intellectual ability

31. 1. Cognition -aka intelligence or ability -the ability to learn about, learn from, understand, and interact with one’s environment -WISC-IV, DAS-II, Woodcock-Johnson Cog-III -intelligence tests are actually collections of subtests -usually, they can be analyzed into two or more types of intelligence: -verbal intelligence -visual-spatial intelligence

32. 1. Cognition -intelligence scores are not a good indicator of function for children with FASD -may be more likely to have declines in IQ score over time since more of the test is devoted to abstract thinking at older ages -watch for uneven profiles, weaknesses in abstract thinking, visual-spatial skills that are better than verbal skills

33. Where is the IQ score? • Although psychologists usually calculate an IQ score, they are not always included in reports because they are easily misunderstood – most psychologists consider percentiles more informative and more helpful

34. 2. Academic Achievement -academic achievement: the extent to which the child has mastered the basic skills taught in school, including reading, spelling, writing, and arithmetic -WIAT-II, Woodcock-Johnson -breaks down into: -reading decoding and comprehension -spelling and writing -math calculations and understanding of math concepts -assessing fluency can be important

35. 3. Memory -Memory: the ability to recover information about experiences in the past -WRAML2, CMS-III, CVLT, Rey Complex Figure -can be broken down into: -short-term memory and long-term memory -visual memory and auditory memory

36. 3. Memory • Memory is rarely universally poor – we are likely to see isolated deficits in working memory (see exec fn), auditory memory, or spatial memory • Many functional memory deficits are actually secondary to attention and executive function problems

37. 4. Attention, Impulse Control, and Hyperactivity -attention: the process of selectively concentrating on one aspect of the environment while ignoring other things -impulse control: the ability to stop and think about the consequences before acting -hyperactivity: a higher than normal level of physical activity and restlessness -impulse control and hyperactivity tend to occur together -almost all children with impulse control and hyperactivity problems will have attention problems -a small group of children have attention problems without impulse control and hyperactivity problems

38. 4. Attention and Hyperactivity -many children and youth come to clinic with a previous diagnosis of ADHD – if this has been carefully done no further assessment may be needed -may also be assessed by a psychologist through interview and parent/teacher questionnaires such as the SNAP, Vanderbilt, BASC2 or CBCL -standardized tests are infrequently used

39. 5. Executive Function Executive Function: A set of high-level thinking skills responsible for organizing and directing the brain’s activities in order to meet long-term goals

40. 5. Executive Function Includes: -planning -shifting and flexibility – the ability to change approaches when something is not working -inhibition – the ability to hold back when something is tempting -working memory – the ability to hold information in mind while thinking

41. 5. Executive Function -the hardest area to assess – it’s hard to design direct tests that are sensitive enough for everyone -usually assessed by the psychologist using a combination of standardized tests (DKEFS, NEPSY) and questionnaires (BRIEF) -difficult to assess well before age 8

42. 6. Adaptive Behaviour and Social Communication -adaptive behaviour: the effectiveness with which individuals meet the standards of personal independence and social responsibility expected of individuals in their age and culture -intelligence is what a child can do under the best possible circumstances; adaptive behaviour is what a child does do under real-life circumstances

43. 6. Adaptive Behaviour and Social Communication -examples: reading signs, talking about feelings, getting ready for school, planning meals, following safety rules, managing time and money, making friends, controlling anger -tends to be very low in individuals with FASD -tends to be unrelated to IQ

44. 6. Adaptive Behaviour and Social Communication -adaptive behaviour is usually assessed by having someone who knows the child well complete a detailed questionnaire or interview -common measures: -Vineland Adaptive Behaviour Scales -ABAS -SIB-R -depends on the quality of the rater – interview measures may be more accurate

45. 7. Sensory/motor • Sensory perception: the brain’s ability to accurately perceive what the eye sees (visual perception) or the ear hears (auditory perception). -visual perception is most commonly assessed by an occupational therapist (OT) - TVPS -auditory perception is most commonly assessed by a speech/language pathologist (SLP) - SCAN

46. 7. Sensory/Motor • Sensory integration: the way the brain organizes and responds to information from the senses. This most commonly refers to over or undersensitivity to stimulation in any of the 5 senses, or to difficulty combining information from 2 different senses -usually assessed by the OT by interview and/or questionnaire -Sensory Profile

47. 7. Sensory/Motor • Motor functioning: the body and brain’s ability to coordinate the muscles to act and move i. Fine Motor – movement of the small muscles in the hands -usually assessed by an occupational therapist using a variety of standardized tests – Bruininks, Peabody, Miller

48. 7. Sensory/Motor ii. Gross Motor – movement of the larger muscles in the arms, legs, and trunk -usually assessed by a physiotherapist using a variety of standardized tests iii. Oral Motor – movement of the tiny muscles of the mouth and tongue -usually assessed by a speech language pathologist using a standardized test – Goldman-Fristoe

49. 8. Communication -communication: the exchange of ideas and information through language and nonverbal behaviour -can be broken down into: -receptive language (understanding language) vs. expressive language (expressing yourself in words) -simple or concrete language vs. complex or abstract language

50. 8. Communication -usually assessed by the speech/language pathologist using several standardized tests, observation, and sometimes parent questionnaires -common tests: -PLS, CELF -PPVT, EVT -TNL, TOPS