Transcript Coordinating Community Child Health Services: Bridging

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
Goal:
Possible
Meaningful
Necessary
Objectives
1. To review core concepts of child
development
2. To share some pearls from my practice with
FASD and other congenital conditions
3. To recognize that adults don’t skip
childhood
4. To develop skills to work more effectively
with parents who may also have special
needs
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
Scope of Developmental
Pediatric Practice
Health
Social Services
Education
Social Services
Scope of my Practice
includes Youth & Adults
Health
Community
Living
Housing
Income
Mental Health
Justice
(AG)
Employment
What is FAS?
1. Growth deficiency
2. Specific facial
anomalies
3. Brain dysfunction
(+/- structural)
4. Prenatal Alcohol
Exposure
National Geographic ~1992)
Ireland
FASD is also “colour blind”!
FASD is “international”!
Prevalence
 Full FAS:
0.33 – 2 per 1000
FAS (Italy): 4 -7. 4 per 1000)
[~1:500]
[~1:200]
 FASD:
9 per 1000
[1:100]
FASD (Italy): 20-40 per 1000 [3:100]
 FASD (BC) 190 per 1000
1986 (Robinson, Conry, et al)
[19/100]
[1:5]
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!
“Labels” vs. Diagnosis
Reserved for Jam
Jars and
Beverage Alcohol
Blueprint for
interventions
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
William Hogarth (1697 - 1764)
Gin Lane
– South Africa, Italy, Russia,
Ukraine, Finland consortium
– UK: 2006(Oxford);2007(BMA)
Goddard & Eugenics
(or was it really FASD?)
A Study in the Heredity of Feeble-Mindedness,
1912
The “Kallikak” Family: Greek καλός and κακός
Art History
Toulouse-Lautrec ~1895
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
Remember FASD is an “umbrella” term.
FETAL ALCOHOL SPECTRUM
DISORDER
Fetal Alcohol Syndrome (FAS)
 Growth
 Facial features
 Brain
 Exposure
Fetal Alcohol Effects (FAE) =
Partial FAS + Alcohol Related
Neurodevelopmental Disorder (ARND)
Canadian Guidelines: Diagnosis
The 4 DIGIT Approach
CMAJ March1,2005 (Chudley, Conry, Cook, Loock, Rosales, Leblanc)
Brain
e.g.: (note that imaging is currently not a useful clinical tool)
Gray Matter Density Increase
Sowell et al., 2001a
Shape Distortion in Frontal
and Parietal Lobes
Sowell et al., 2001b
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)
“ALARM”*s
•
•
•
•
•
Adaptive Behavior
Language
Attention
Reasoning
Memory
*From Loock “LLAMA”, 1993; Conry & Fast 2000
*
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
Some Adaptive Skills
•
•
•
•
•
Communication
Self-Care
Home living
Social Skills
Community Use
• Self-direction
• Health and Safety
• Functional
Academics
• Leisure
• Work
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
Attention
• About 60% of individuals
with FASD have “attention
problems”.
• Distractibility, impulsivity
Streissguth et al., 1996
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
Memory
• Memory deficits
• Poor concept of time and
sequencing
• Confabulation
• False confessions
Diagnosis in Youth and Adults
Growing up with FAS
Why a diagnosis may be harder to
obtain in older individuals:
1.
2.
3.
4.
5.
6.
7.
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.
Wisdom of Practice:
Where are Adults
with FASD Today
And where do most of them
currently access services?
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
Having higher IQ (e.g. “FAE”) often means
greater difficulties for some areas!
Special Needs and the Law
Special needs CIC are more likely to be in jail than to graduate!
100%
90%
% with special needs
80%
70%
60%
50%
Male
40%
Female
30%
20%
10%
0%
General
Population
Corrections
overall
Corrections CIC
“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
Wisdom of Practice:
Where are Adults
with FASD Today
And what do they tell us?
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”.
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 differences to 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))
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 be for 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
– And adults 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.
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
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