linking brain function with ... - fasd waterloo region · 4. 3-5% births = fasd in western world 5....

Bingeman’s (KidsAbility Forum)

Waterloo, Ontario

November 21, 2013

Linking brain function with behaviors:

Understanding and application of a

brain-based approach

Diane V. Malbin, MSW

© FASCETS, Inc.

Universal

• Research from around the world is

consistent

• Regardless of nation or culture, education

or income, prenatal exposure affects

brains

• The question is: What does it mean for

you? Your work? Your community?

What if?

© FASCETS, Inc.

Logic model

Is FA/NB a physical condition?

1. Genetics, trauma, and a wide range of

teratogens and events cause physical changes

2. Alcohol kills cells, including in the brain

3. Alcohol and other drugs affect the structure and

function of the brain

4. Behaviors are usually the only symptoms

5. FA/NB is an invisible physical disability with

behavioral symptoms

If FA/NB is an invisible physical

disability

Then Providing accommodations for

people with FA/NB is as appropriate and

effective as providing accommodations

for people with other physical disabilities

© FASCETS, Inc.

Specific points about FASD

1. FAS = leading cause DD in Western world

2. 90-100% FASD (and FA/NB) still not diagnosed

3. 1-3/1,000 = FAS (facial features require alcohol exposure

between days 18-21 of gestation)

4. 3-5% births = FASD in Western World

5. FASD with no facial features at greater risk

6. 80% of all people drink, 50-75% pregnancies unplanned

7. 16-35% of all pregnancies “at risk” (Jones)

8. Average IQ 74; range 20-130

9. Epigenetics research, paternal effects (Greengard 2010)

© FASCETS, Inc.

Importance of Identification

• Pivotal: Brain-based physical condition

• Identifies etiology

• Reframes the meaning of behaviors:

From won’t to can’t

• Redefines the nature of the problem

• Redefines focus for interventions

• Key for prevention

© FASCETS, Inc.

Examples of success

Artist, musician

Warehouse person

Electrician

Boat builder

Mechanic

Child care worker

Animal rescue worker

Drummer, dancer

BA, BS, MA, MSW, PhD

Office worker

Special ed. teacher

Counselor

Massage therapist

Truck driver

Husband, wife: Parents

Delivery person

Parent

Adult care worker

Neurobehavioral Foundation

What’s the brain got to do,

got to do with it?

© FASCETS, Inc.

Pre- and postnatal events

affecting brain development

1. Exposure to teratogens, including

alcohol and other drugs

2. Illness

3. Traumatic brain injury

4. Severe abuse, trauma and/or neglect

© FASCETS, Inc.

Alcohol Drugs Tobacco TBI Genetics Illness Anoxia

Brain function Memory problems

Executive functioning

Processing

Different source, similar symptoms?

© FASCETS, Inc.

Myelin sheath

Dendrites

Nuclei

Axons

Processes quickly

Many interconnections

Demyelination, processes slowly

Fewer interconnections

© FASCETS, Inc.

Comparison:

Effects of drugs on prenatal development

Effects: Alcohol Cocaine Marijuana

Low birth weight

X X

Intellect, Development X

Organ

damage X

Hyperactivity X X

Source: US Department of Health and Human Services

X

© FASCETS, Inc.

Paternal Use:

Findings of effects on pregnancy outcome

1. Low birth weight

2. Impaired cognitive skills, increased hyperactivity in

sons of alcoholic fathers

3. Changes in behaviors of sons of alcoholic fathers

4. Low count and altered structure of sperm

5. Lower rates of pregnancies; sons were less fertile

6. Decreased activity of sperm and lower testosterone

levels

7. Effects on epigenetics, or expression of genes on

cognitive functioning

© FASCETS, Inc.

Photo courtesy of Sterling Clarren, MD

© FASCETS, Inc.

Alcohol Health and Research World

© FASCETS, Inc.

Scientific American 1995

© FASCETS, Inc.

FASD is an invisible physical disability

Brain changes = behavioral changes

© FASCETS, Inc.

Brain break: Fjord, Norway

Primary and secondary

behavioral symptoms and

tertiary problems

© FASCETS, Inc.

Definition:

Primary neurobehavioral symptoms

Behavioral symptoms of underlying brain structure and function, including strengths.

Source: Ann Streissguth, 1996

© FASCETS, Inc.

Primary neurobehavioral symptoms

1. Developmental level of functioning

2. Sensory systems

3. Nutrition

4. Language and communication

5. Processing pace: How fast the brain works

6. Learning and memory

7. Abstract thinking

8. Executive functioning

9. Strengths

© FASCETS, Inc.

Uneven development 6 year old

Actual age of person:____6

Developmental age---3

Strengths (art, sports)----------------10

Expressive language------------8

Receptive language-2

Reading ------------------4

Comprehension ----3

© FASCETS, Inc.

Uneven development adolescent

Actual age of person: 16

Developmental age--------8

Strengths (art, sports)----------------------------22

Expressive language---------------------20

Receptive language----6

Reading ---------------------------12

Comprehension ------5

© FASCETS, Inc.

Functional and academic deficits:

Adolescents and Adults with FASD

Vineland Chronological Age Developmental

Mean Age Equivalent

Adaptive Behavior 16.6 9.1

Communication Skills 16.6 9.0

Daily Living Skills 16.6 10.1

Socialization Skills 16.6 7.5

PPVT Receptive Language 16.6 6.8

Source: Streissguth 1996

© FASCETS, Inc.

Primary behaviors: Strengths

Artistic

Musical

Mechanical

Athletic

Creative

Determined

Willing

© FASCETS, Inc.

Learning strengths

• Relational: 1:1

• Visual

• Auditory

• Kinesthetic, multimodal, hands-on

• Experiential, learns by doing

© FASCETS, Inc.

Definition:

Secondary behavioral symptoms

Defensive behaviors that develop over

time when there is a “poor fit”

Defensive behaviors are normal reactions to pain and

frustration and may be prevented or resolved

Adapted from: Ann Streissguth, 1996

© FASCETS, Inc.

Drawing by mother of 15-year-old

© FASCETS, Inc.

Drawing by 15-year-old with FASD

© FASCETS, Inc.

Secondary behavioral symptoms

• Easily tired, fatigued

• Anxious

• Lonely, isolated

• Shut down; flat affect

• Fearful, withdrawn

• Depressed

• Frustrated, short fuse, angry

© FASCETS, Inc.

Organized, efficient less energy required for task

Conner, et al 2005

PET Scans: The better the brain is organized, the less

energy is required to do the task

© FASCETS, Inc.

Organized, efficient FAS: Disorganized, less

less energy required for task efficient, more energy

Conner, et al 2005

PET Scans: The greater the disorganization, the harder

the entire brain works, causing fatigue and irritability

© FASCETS, Inc.

Poor fit

FASD Characteristic

Visual learner………..........

Processes slower…………

Needs external support….

Difficulty organizing………

Concrete……………..........

Technique, values

Verbal instruction

Fast paced

Work independently

Organize, prioritize

Abstract

© FASCETS, Inc.

Good fit

FASD Characteristic

Visual learner……………..

Processes slower…………

Needs external support….

Difficulty organizing………

Concrete……………..........

Technique, values

Provide visual cues

Allow adequate time

Provide supports

Provide structure

Experiential, build on

strengths

What strategies are used to try to

change behaviors?

© FASCETS, Inc.

Current practice

Learning theory assumes

the ability of the brain to:

Store information…….…….

Retrieve information………

Form associations…………

Abstract…………………….

Generalize………………….

Predict………………………

Conceptualize……………..

Process quickly…………….

Research on FASD has

found:

Difficulty with memory

Difficulty retrieving information

Difficulty forming links

Concrete

Difficulty generalizing

Difficulty predicting

Gets piece, not picture

Processes slowly

© FASCETS, Inc.

What systems use cognitive behavioral

approaches?

Parenting

Education

Justice

Mental health

Addictions treatment

Social services

Others

© FASCETS, Inc.

There’s nothing wrong with the technique

The problem:

Assumptions about brain function are not

usually examined for their fit with actual

brain function

The bigger issue is that the problem

definition misses the mark: Brain function

© FASCETS, Inc.

Paradox

• Good techniques, poor fit = Try harder: Behaviors deteriorate

• Recognize brain function, provide accommodations: Secondary behaviors resolve

• The goal is the same, approach paradoxical

Emotional reactions to behaviors

Where do these come from?

Why so strong?

© FASCETS, Inc.

Values and values clashes

Primary

characteristic

Values,

expectations

Interpretation /

Feelings

Intervention Secondary

symptom

Accommodation:

Build on

strengths

© FASCETS, Inc.


Primary

characteristic

Values,

expectations

Interpretation /

Feelings


symptom

Accommodation:

Build on

strengths

Dysmaturity

© FASCETS, Inc.


Primary

characteristic

Values,

expectations

Interpretation /

Feelings


symptom

Accommodation:

Build on

strengths

Dysmaturity

Act your age

© FASCETS, Inc.


Primary

characteristic

Values,

expectations

Interpretation /

Feelings


symptom

Accommodation:

Build on

strengths

Dysmaturity

Act your age

Being a baby,

Lazy, not trying

Frustrated

© FASCETS, Inc.


Primary

characteristic

Values,

expectations

Interpretation /

Feelings


symptom

Accommodation:

Build on

strengths

Dysmaturity

Act your age

Being a baby,

Lazy, not trying

Frustrated

Punish

© FASCETS, Inc.


Primary

characteristic

Values,

expectations

Interpretation /

Feelings


symptom

Accommodation:

Build on

strengths

Dysmaturity

Act your age

Being a baby,

Lazy, not trying

Frustrated

Punish

Anxiety, anger

© FASCETS, Inc.


Primary

characteristic

Values,

expectations

Interpretation /

Feelings


symptom

Accommodation:

Build on

strengths

Dysmaturity

Act your age

Being a baby,

Lazy, not trying

Frustrated

Punish

Anxiety, anger

Think younger

Adjust expectations

© FASCETS, Inc.


Primary

characteristic

Values,

expectations

Interpretation /

Feelings


symptom

Accommodation:

Build on

strengths

Dysmaturity

Act your age

Being a baby,

Lazy, not trying

Frustrated

Punish

Anxiety, anger

Think younger

Adjust expectations

Confabulation

Honesty

Lying,

manipulative,

“At me”

Fear, angry sad

Punish, ground

Anger, denial

Recognize brain

dysfunction, alter

communication

Memory

problems

Remember

“Should” know!!

Angry frustrated

Remove

privileges

Anger, frustration

Accept need to

reteach, based on

learning strengths

Slow processing

pace

Value speed –

think fast

Not trying,

withholding ,

on purpose

Angry, frustrated

Speed up, yell,

embarrass

Shut down, fear,

avoidance,

withdrawal

SLOW DOWN!

Use fewer words

Difficulty

generalizing,

gets the piece,

not the picture

Know and apply

concepts in

different settings

Breaking the rules,

Should understand

concepts in all

settings

Angry, frustrated

Consequence

Confusion,

anxiety,

frustration

anger

Show rather than

tell, reteach in

different settings

© FASCETS, Inc.

Overlapping Diagnoses

© FASCETS, Inc.

Paradigm in Practice

We see what we look for

We look for what we know.

Goethe

© FASCETS, Inc.

Contributions and limitations of the

DSM

• FASD is not in the DSM (Is in appendix, DSM 5)

• DSM organizes presenting symptoms

• DSM provides reliability

• Etiology is required for validity

• DSM provides reliability without validity

(Adapted from Andreasen, MD PhD)

Multiple diagnoses often cause confusion,

rather than contribute clarity

© FASCETS, Inc.

New DSM 5: Critiques

New DSM-5 Ignores Biology of Mental

Illness Scientific American: 4/30/2013

“…symptoms alone rarely indicate the

best choice of treatment….Patients with

mental disorders deserve better.”

Thomas Insel, MD, Director NIMH: 4/29/2013

© FASCETS, Inc.

Neurobehavioral disorder associated with

prenatal alcohol exposure (ND-PAE)

“…Essential features are the manifestation of

impairment in neurocognitive, behavioral and adaptive

functioning”

Proposed criteria:

• More than minimal exposure to alcohol during

gestation…

• Impaired neurocognitive functioning

• Impaired self-regulation

• Impairment in adaptive functioning

DSM 5 appendix, p 798

© FASCETS, Inc.

Accumulation of Diagnoses:

Select list

Primary symptoms:

Failure to thrive

Pervasive Developmental Delay

Speech and Language Delay

Attention Deficit Disorder

Secondary symptoms:

Reactive Attachment Disorder

Oppositional Defiant Disorder

Post-traumatic stress disorder / trauma

© FASCETS, Inc.

Current model

ADD

LD

ODD

PDD

PTSD

RAD

Multiple diagnoses, fragmentation

Autism

© FASCETS, Inc.

FASD is not a differential diagnosis

ADD

LD

ODD

PDD

PTSD

RAD

Autism

ND/PAE

© FASCETS, Inc.

Brain-based model

ADD

LD

ODD

PDD

PTSD

RAD

The brain is the organizing principle

Autism

Brain function

© FASCETS, Inc.

Level of expectation

Chronic discrepancy

Birth Average level of performance

Development of Burnout

Visual based on Freudenberger

© FASCETS, Inc.

Actual levels of performance

Inconsistent performance

Random Reinforcement

© FASCETS, Inc.

1. Gap

2. Judgment

Anger, punishment, defenses, rigid defenses

Brain

Person

© FASCETS, Inc.

No information Identification Resolution

Fear, anger, frustration

Sadness, guilt, depression

Understanding, peace

© FASCETS, Inc.

Adjusting expectations

The better the fit between expectation and ability, the less stress

Level of expectation

Ability

© FASCETS, Inc.

It really looks more like this…

Brain function trumps behaviors

Where there is anger, frustration

or blame: There is missing

information

What is the question?

© FASCETS, Inc.

Paradigm: Way of seeing

Paradigm shift: Seeing differently

”I get it…she has the disability.

We have to do the changing.

Source: Parent of child with FASD

© FASCETS, Inc.

Paradigm Shifts and FASD

From:

Won’t…………………….

IS the problem…..……..

Doesn’t work…………...

Acts immature………….

Doesn’t try……………...

To:

Can’t

HAS a problem

Has trouble starting

Is dysmature

Tired of failing

Creating a goodness of fit

to prevent problems:

Application of a Neurobehavioral

approach

© FASCETS, Inc.

Brain-based approach: everyone fits

O

x x

O O

x x O

X

O

Celebrates cognitive and cultural diversity

© FASCETS, Inc.

Tangible Physical Elements

Affecting sensory systems

Sight: Lighting, decorations, distractions

Sound: Noise level, buzzing, interruptions

Smell: Lunchroom, bodies, perfume

Touch: Textures, objects, proximity, furniture

© FASCETS, Inc.

“Invisible” elements: Smorgasbörd

Values, norms, expectations, timelines

Schedule, changes in routine

Age-based expectations and grouping

Instructional technique, level of abstraction

Language-based instruction

Bell curve, competition

Learning theory, shared perceptions, systems

homeostasis

Parenting and professional curricula

© FASCETS, Inc.

Comparison of Environments:

Controlling

Work at the person……

Punish………………….

Coerce………………….

Rigid…………………….

Top down, power play..

Tell……………………...

Alienate…………………

Structured

Work with the person

Prevent

Collaborate

Flexible, resilient

Reciprocal, relational

Ask

Relate

Keep it simple

A functional neurobehavioral assessment

FNA: Person, setting and fit

© FASCETS, Inc.

Application: Functional Neurobehavioral Assessment

Setting:____________________ Age: ___ Developmental age: ___

1

Task or

Expectation

2

Brain has

to

3

Primary

symptoms

FA/NB

4

Devel. Age

(estimate)

5

Secondary

behaviors

5

Strengths

6

Accommodations

© FASCETS, Inc.


Setting: ___School___________ Age: _6_ Developmental age: _3_

1

Task or

Expectation

2

Brain has

to

3

Primary

symptoms

FA/NB

4

Devel. Age

(estimate)

5

Secondary

behaviors

5

Strengths

6

Accommodations

Sit still and

listen

© FASCETS, Inc.



1

Task or

Expectation

2

Brain has

to

3

Primary

symptoms

FA/NB

4

Devel. Age

(estimate)

5

Secondary

behaviors

5

Strengths

6

Accommodations

Sit still and

listen

Process

fast

© FASCETS, Inc.



1

Task or

Expectation

2

Brain has

to

3

Primary

symptoms

FA/NB

4

Devel. Age

(estimate)

5

Secondary

behaviors

5

Strengths

6

Accommodations

Sit still and

listen

Process

fast

Slow

processing

pace

© FASCETS, Inc.



1

Task or

Expectation

2

Brain has

to

3

Primary

symptoms

FA/NB

4

Devel. Age

(estimate)

5

Secondary

behaviors

5

Strengths

6

Accommodations

Sit still and

listen

Process

fast

Slow

processing

pace

3

© FASCETS, Inc.



1

Task or

Expectation

2

Brain has

to

3

Primary

symptoms

FA/NB

4

Devel. Age

(estimate)

5

Secondary

behaviors

5

Strengths

6

Accommodations

Sit still and

listen

Process

fast

Slow

processing

pace

3

Frustration

© FASCETS, Inc.



1

Task or

Expectation

2

Brain has

to

3

Primary

symptoms

FA/NB

4

Devel. Age

(estimate)

5

Secondary

behaviors

5

Strengths

6

Accommodations

Sit still and

listen

Process

fast

Slow

processing

pace

3

Frustration

Visual

learner

© FASCETS, Inc.



1

Task or

Expectation

2

Brain has

to

3

Primary

symptoms

FA/NB

4

Devel. Age

(estimate)

5

Secondary

behaviors

5

Strengths

6

Accommodations

Sit still and

listen

Process

fast

Slow

processing

pace

3

Frustration

Visual

learner

Provide visual

cues, use fewer

words

© FASCETS, Inc.



1

Task or

Expectation

2

Brain has

to

3

Primary

symptoms

FA/NB

4

Devel. Age

(estimate)

5

Secondary

behaviors

5

Strengths

6

Accommodations

Sit still and

listen

Process

fast

Slow

processing

pace

3

Frustration

Visual

learner

Provide visual

cues, use fewer

words

Be age-

appropriate

Develop

“on time”

Dysmaturity 3 Isolation

depression

Willing,

relational

Adjust

expectations:

“stretch toddler”

© FASCETS, Inc.



1

Task or

Expectation

2

Brain has

to

3

Primary

symptoms

FA/NB

4

Devel. Age

(estimate)

5

Secondary

behaviors

5

Strengths

6

Accommodations

Sit still and

listen

Process

fast

Slow

processing

pace

3

Frustration

Visual

learner

Provide visual

cues, use fewer

words

Be age-

appropriate

Develop

“on time”

Dysmaturity 3 Isolation

Depression

Willing,

relational

Adjust

expectations,

“Stretch toddler”

Sit and

learn, paper

and pencil

Ability to

abstract

Concrete,

difficulty

with

abstraction

2 Anger,

frustration,

avoidance

Learns by

doing

Hands-on

Kinesthetic

© FASCETS, Inc.

“Repurposing” Mental Health Tx

Current practice

• Secondary symptoms = problem

• Burden on tx providers to “fix”

problems

• Values-laden interpretations:

Symptoms targeted for change

• Brain function typically not

factored in to tx plans, goals

• Tx programs typically cognitive,

language-based

• Accumulated diagnoses, repeat

admissions

Repurposed

• Brain: Identify etiology, strengths

• Reframe problems and solutions

• Create conditions for “settling”

• Research-informed

understanding

• Expand tx goals, techniques

• Engage, educate others post-tx

• Assure seamless transitions,

sustained conditions for health

© FASCETS, Inc.

What is the question?

• The first questions are always:

• Who is the person?

• What if? What about brain function?

• What is the fit?

• Whose needs are being met?

© FASCETS, Inc.

Observe to Find Patterns: Functional neurobehavioral assessment

• Are behaviors primary or secondary?

• Observe without interpreting

• What did you see?

• What happened just before?

• Describe the setting, environment

• Were there other factors? E.g.

unexpected change?

© FASCETS, Inc.

Cliff notes: Starter strategies

1. Stop fighting, step back, breathe

2. Ask what if? Think brain

3. Slow down, give time: 10-second kid

in a 1-second world

4. Think younger

5. Observe, adapt

6. Show, repeat

7. Keep it super simple

8. Be gentle with yourself

© FASCETS, Inc.

Accommodations

1. FASD is an invisible physical disability

2. Changes in the brain are physical

3. Behaviors are symptoms

4. Trying harder to change neurobehavioral symptoms exacerbates frustration

5. Recognizing brain function and providing accommodations prevents problems

6. This is the same principle as for people with more obvious disabilities

7. It works

© FASCETS, Inc.

Emerging best practices

British Columbia’s province-wide,

cross-Ministry application of this

neurobehavioral model

BC MCFD web site with FASD evaluations

http://www.mcf.gov.bc.ca/fasd/index.htm

http://www.mcf.gov.bc.ca/fasd/index.htm

Diane V. Malbin, MSW

FASCETS

PO Box 69242

Portland, OR 97239

[email protected]

www.fascets.org

mailto:[email protected]

mailto:[email protected]

http://www.fascets.org/

linking brain function with ... - fasd waterloo region · 4. 3-5% births = fasd in western world 5....

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