Languages of Assessment:Working with Parents with

Special Needs Christine Loock, MD, FRCPC

Associate Professor, Pediatrics, UBC

May 29, 2008

Department of PediatricsUniversity of British Columbia

Goal:

Possible

NecessaryMeaningful

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

Health

EducationSocial Services

Scope of Developmental Pediatric Practice

Health

Mental Health

Justice(AG)

EmploymentIncome

Housing

Community Living

Scope of my Practice includes Youth & Adults

So

cial

Ser

vice

s

1.Growth deficiency

2.Specific facial anomalies

3.Brain dysfunction (+/- structural)

4.Prenatal Alcohol Exposure

What is FAS?

National Geographic ~1992)

Ireland

FASD is “international”!FASDFASD isis also also “colour“colour blind”! blind”!

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]

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– South Africa, Italy, Russia,

Ukraine, Finland consortium – UK: 2006(Oxford);2007(BMA)

William Hogarth (1697 - 1764)Gin Lane

Goddard & Eugenics

The “Kallikak” Family: Greek καλός and κακός

A Study in the Heredity of Feeble-Mindedness, 1912

(or was it really FASD?)

Toulouse-Lautrec ~1895

Art History

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

FETAL ALCOHOL SPECTRUM DISORDER

Fetal Alcohol Syndrome (FAS)

GrowthFacial featuresBrainExposure

Fetal Alcohol Effects (FAE) =

Partial FAS + Alcohol Related Neurodevelopmental Disorder (ARND)

Remember FASD is an “umbrella” term.

Canadian Guidelines: Diagnosis The 4 DIGIT Approach

CMAJ March1,2005 (Chudley, Conry, Cook, Loock, Rosales, Leblanc)

Brain

Sowell et al., 2001a

Gray Matter Density Increase Shape Distortion in Frontal and Parietal Lobes

Sowell et al., 2001b

e.g.: (note that imaging is currently not a useful clinical tool)

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

• Slow to process language• Don’t understand the language• Concrete and literal• Acquiescence• Yielding to leading questions• Shifting in response to negative feedback

Language “Don’t teach them fast, teach them slow”

Attention

• About 60% of individuals with FASD have “attention problems”.

• Distractibility, impulsivityStreissguth 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 deficits

• Poor concept of time and sequencing

• Confabulation

• False confessions

Memory

Diagnosis in Youth and Adults

Growing up with FAS

Why a diagnosis may be harder to obtain in older individuals:1. Recognition of full FAS may less likely in teens and

adults due to pubertal growth and maturation.

2. The history of alcohol exposure might be harder to get.

3. Other factors leading to brain dysfunction might obscure the initiating role of alcohol (Addiction & Mental Health issues).

4. But the case definition for FASD does not change!

5. And, the method of evaluation of the brain is the same in this group as in younger children (and may be even better evaluated.)

6. It comes down to services & loss of continuity of care!

7. 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!

0%

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GeneralPopulation

Correctionsoverall

Corrections CIC

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pecia

l needs

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Supporting the Transition from Adolescent to Adult:

based on functional needs extending the age of support from

birth -24 yearsfor children & youth with special needs.

RCY Judge Mary Ellen Turpel-Lafond

“CYSN”

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