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Moving Ahead in the Assessment and Diagnosis of FASD. Christine Lilley, PhD Registered Psychologist Sunny Hill Health Centre for Children Vancouver, BC. Outline. Review of diagnostic issues Functional assessment -what do you know? -what do you want to know?. The CDBC Network.

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Moving ahead in the assessment and diagnosis of fasd
Moving Ahead in the Assessment and Diagnosis of FASD

Christine Lilley, PhD

Registered Psychologist

Sunny Hill Health Centre for Children

Vancouver, BC


Outline
Outline

  • Review of diagnostic issues

  • Functional assessment

    -what do you know?

    -what do you want to know?


The cdbc network
The CDBC Network

Stands for ‘Complex Developmental/Behavioural Conditions’

Created in 2005 to provide assessments of FASD and other conditions


Organization
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


Organization1
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


Diagnosis
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


Diagnosis what kind of evidence are we looking for
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


Diagnosis what kind of evidence are we looking for1
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


What determines which fasd diagnosis is given
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


The fetal alcohol spectrum
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





What do the numbers mean1
What do the numbers mean?

4=Completely convincing evidence

3=Some evidence, convincing enough

2=Some evidence, not convincing enough

1=No evidence


Practice moving from numbers to diagnosis
Practice moving from numbers to diagnosis

1433

1232

1233

4441

3323

4141


Fetal alcohol syndrome fas
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.


Partial fetal alcohol syndrome pfas
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.


Alcohol related neurodevelopmental disorder arnd
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.


What if there isn t enough evidence
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


What if there isn t enough evidence1
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


Diagnosis vs designation
Diagnosis vs. Designation

The health care system makes diagnoses; the school system makes designations.


Diagnosis vs designation1
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)


Diagnosis vs designation2
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


Diagnosis vs designation3
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.


Common informal diagnoses without diagnostic rules
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.”


New directions under discussion
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.



Diagnostic rules for the brain
Diagnostic Rules for the Brain student’s educational program

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


8 brain domains
8 Brain Domains student’s educational program

  • Cognition (Psychologist)

  • Academic Achievement (Psychologist)

  • Memory (Psychologist)

  • Attention/Activity Level (Psychologist)

  • Executive Function (Psychologist)

  • Adaptive Behaviour (Psychologist)

  • Sensory/Motor (OT)

  • Communication (SLP)


Common presentations
Common presentations student’s educational program

  • 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


1 cognition
1. Cognition student’s educational program

-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


1 cognition1
1. Cognition student’s educational program

-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


Where is the iq score
Where is the IQ score? student’s educational program

  • 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


2 academic achievement
2. Academic Achievement student’s educational program

-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


3 memory
3. Memory student’s educational program

-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


3 memory1
3. Memory student’s educational program

  • 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


4 attention impulse control and hyperactivity
4. Attention, Impulse Control, and Hyperactivity student’s educational program

-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


4 attention and hyperactivity
4. Attention and Hyperactivity student’s educational program

-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


5 executive function
5. Executive Function student’s educational program

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


5 executive function1
5. Executive Function student’s educational program

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


5 executive function2
5. Executive Function student’s educational program

-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


6 adaptive behaviour and social communication
6. Adaptive Behaviour and Social Communication student’s educational program

-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


6 adaptive behaviour and social communication1
6. Adaptive Behaviour and Social Communication student’s educational program

-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


6 adaptive behaviour and social communication2
6. Adaptive Behaviour and Social Communication student’s educational program

-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


7 sensory motor
7. Sensory/motor student’s educational program

  • 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


7 sensory motor1
7. Sensory/Motor student’s educational program

  • 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


7 sensory motor2
7. Sensory/Motor student’s educational program

  • 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


7 sensory motor3
7. Sensory/Motor student’s educational program

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


8 communication
8. Communication student’s educational program

-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


8 communication1
8. Communication student’s educational program

-usually assessed by the speech/language pathologist using several standardized tests, observation, and sometimes parent questionnaires

-common tests:

-PLS, CELF

-PPVT, EVT

-TNL, TOPS


8 communication2
8. Communication student’s educational program

Common presentations:

-generalized language impairments/language-based learning disabilities

OR

-decent basic language but significant problems with very abstract language, figurative or ambiguous language, narrative language


Where do i look to find the diagnosis
Where do I look to find the diagnosis? student’s educational program

-ideally the psychology and pediatrics report would both carry the same diagnosis

-however, in some regions, especially those where there may be months between assessments, a report may be released with some preliminary information before a final diagnosis is given

-get to know your region

-if in doubt, call the diagnostic team for clarification


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