Broad Spectrum ASD: What's the diagnosis? What should we do?

Josh Feder, MD Momsfightingautism April 14, 2012

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Broad Spectrum ASD: What's the diagnosis? What should we do?
Josh Feder, MD Momsfightingautism April 14, 2012

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Director of Research, Graduate School, Interdisciplinary Council on Developmental and Learning Disorders

Assistant Clinical Professor, Voluntary Dept of Psychiatry, University of California at San Diego School of Medicine

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Outline
•Vignettes: four ‘typical’(?) cases

•How Diagnosis drives care decisions
•Digging deeper: is ‘all’ explained’ by ASD? •Understanding Evidence Based Practice in ASD •Differential / multiple diagnostic considerations •Maturational and developmental considerations •Family systems aspects of complex situations •DSM, and DMIC diagnostic systems •Planning & Reflective Process

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Three Big Ideas about how we can improve what we know and figure out what to do
• Evidence Based Practice • Crowd sourcing • Reflective practice

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Outline
•Vignettes: four ‘typical’(?) cases

•How Diagnosis drives care decisions
•Digging deeper: is ‘all’ explained’ by ASD? •Understanding Evidence Based Practice in ASD •Differential / multiple diagnostic considerations •Maturational and developmental considerations •Family systems aspects of complex situations •DSM, and DMIC diagnostic systems •Planning & Reflective Process

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Vignettes
•Adult: compulsive substance use,

trouble on the job; few friends; very discouraged with life. •Adolescent who was inappropriate with a young girl he was babysitting. •Third grader tantrums when asked to read the chapter book; trips to office then home for the day. •Preschooler in a Pre-k class: very active; won't stay seated for circle, plays only with his Thomas toy.

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Outline
•Vignettes: four ‘typical’(?) cases

•How Diagnosis drives care decisions
•Digging deeper: is ‘all’ explained’ by ASD? •Understanding Evidence Based Practice in ASD •Differential / multiple diagnostic considerations •Maturational and developmental considerations •Family systems aspects of complex situations •DSM, and DMIC diagnostic systems •Planning & Reflective Process

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Usual Diagnosis, driving usual care
• Substance dependence: 12-step
• Sex Offender: Incarceration • Misbehaving: Positive Behavioral

Management • Not ready: Waiting and retrying Pre-K

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Outline
•Vignettes: four ‘typical’(?) cases

•How Diagnosis drives care decisions
•Digging deeper: is ‘all’ explained’ by ASD? •Understanding Evidence Based Practice in ASD •Differential / multiple diagnostic considerations •Maturational and developmental considerations •Family systems aspects of complex situations •DSM, and DMIC diagnostic systems •Planning & Reflective Process

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Digging deeper: ‘all is explained’?
• We see them when other approaches have

failed • All turned out to have long-standing impairments in social communication and in their range of interests. • At the root of their troubles is a form of broad phenotype ASD • We recommend evidence based practice approaches to addressing these deficits.

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Outline
•Vignettes: four ‘typical’(?) cases

•How Diagnosis drives care decisions
•Digging deeper: is ‘all’ explained’ by ASD? •Understanding Evidence Based Practice in ASD •Differential / multiple diagnostic considerations •Maturational and developmental considerations •Family systems aspects of complex situations •DSM, and DMIC diagnostic systems •Planning & Reflective Process

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Evidence Based Practice

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Evidence Based Practice:
• We do not usually have good enough

research to really say what is going to be best; but we use what we have of relevant research.

• Clinicians need to use their judgment
and experience in vetting relevant research
• To provide

families with choices so

that they can make informed consent decisions based on their own family culture and values.

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Outline
•Vignettes: four ‘typical’(?) cases

•How Diagnosis drives care decisions
•Digging deeper: is ‘all’ explained’ by ASD? •Understanding Evidence Based Practice in ASD •Differential / multiple diagnostic considerations •Maturational and developmental considerations •Family systems aspects of complex situations •DSM, and DMIC diagnostic systems •Planning & Reflective Process

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Differential / multiple diagnostic considerations: ASD + in our ‘cases’
•ASD + substance dependence, obsessive

compulsive disorder, depression •ASD + conduct disorder, pedophilia •ASD + reading disorder, oppositional defiant disorder, bipolar disorder (or the newer Disruptive Mood Dysregulation Disorder) •ASD + ADHD, ASD, OCD •Genetic links: ASD, ADHD, Bipolar, Schizophrenia…

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Differential / multiple diagnostic considerations •We have very little research on numbers or

on treatment of ASDs combined with other conditions •So we need to rely on clinician intuition – which, as it turns out, can be pretty consistent with the research that we have.

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Differential / multiple diagnostic considerations: Crowd Sourcing
•The Wisdom of Crowds – James Surowiecki •From the weight of a cow to the location of a

lost sub, to the shapes of protein molecules and cooperative traffic patterns •Many people together can create a powerful form of ‘artificial-artificial intelligence’ •Feder 2012: crowd sourcing – tapping clinician intuition.

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Differential / multiple diagnostic considerations: Crowd Sourcing requirements
•1. Independence – have you read the paper

already? Avoiding anchoring influence (reviewed usual rates afterward), and ‘blind’ rating – not seeing what others are voting. •2. Diversity – experts and amateurs ok – avoiding using just one distinguished expert to answer the question. •(3. Feder ’s sorting mechanism: used independent ‘crowd reader’ to keep results independent from Feder)

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Differential / multiple diagnostic considerations: Crowd Sourcing ‘play at home!’
•We’ll do ‘Artificial artificial-artificial

intelligence’ (sort of pretending) •Make your guesses in the comfort of your own home – I’ll show you how! •I’ll tell you what the diverse group of experts said: compare your answer! •One day we’ll have real time tech for this...and more research on numbers and treatment for comparison too!

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Crowd Sourcing - how to ‘vote’

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Lugnega, et. al. Psychiatric comorbidity in young adults with a clinical diagnosis of Asperger Syndrome. Res. Dev. Disab. 32 (2011) 1910–1917
• This is the study we are comparing

with our intuition. • Then we’ll look at what the numbers are in the neuro-typical population

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source ?

% - Lugnega

% - ‘NT’

ADHD
Substance Disorders Tourette’s Psychosis

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60

% - Lugnega ?

% - ‘NT’

ADHD
Substance Disorders Tourette’s Psychosis

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60 ?

% - Lugnega 70

% - ‘NT’

ADHD
Substance Disorders Tourette’s Psychosis

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60 50

% - Lugnega 70 ?

% - ‘NT’

ADHD
Substance Disorders Tourette’s Psychosis

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60 50 ?

% - Lugnega 70 50

% - ‘NT’

ADHD
Substance Disorders Tourette’s Psychosis

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60 50 15

% - Lugnega 70 50 ?

% - ‘NT’

ADHD
Substance Disorders Tourette’s Psychosis

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60 50 15 ?

% - Lugnega 70 50 9

% - ‘NT’

ADHD
Substance Disorders Tourette’s Psychosis

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60 50 15 45

% - Lugnega 70 50 9 ?

% - ‘NT’

ADHD
Substance Disorders Tourette’s Psychosis

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60 50 15 45 ?

% - Lugnega 70 50 9 56

% - ‘NT’

ADHD
Substance Disorders Tourette’s Psychosis

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60 50 15 45 35

% - Lugnega 70 50 9 56 ?

% - ‘NT’

ADHD
Substance Disorders Tourette’s Psychosis

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60 50 15 45 35

% - Lugnega 70 50 9 56 7

% - ‘NT’

ADHD
Substance Disorders Tourette’s Psychosis

?

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60 50 15 45 35

% - Lugnega 70 50 9 56 7

% - ‘NT’

ADHD
Substance Disorders Tourette’s Psychosis

25

?

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60 50 15 45 35

% - Lugnega 70 50 9 56 7

% - ‘NT’

ADHD
Substance Disorders Tourette’s Psychosis

25
?

30

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60 50 15 45 35

% - Lugnega 70 50 9 56 7

% - ‘NT’

ADHD
Substance Disorders Tourette’s Psychosis

25
5

30
?

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60 50 15 45 35

% - Lugnega 70 50 9 56 7

% - ‘NT’

ADHD
Substance Disorders Tourette’s Psychosis

25
5 ?

30
7

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60 50 15 45 35

% - Lugnega 70 50 9 56 7

% - ‘NT’

ADHD
Substance Disorders Tourette’s Psychosis

25
5 6

30
7 ?

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60 50 15 45 35

% - Lugnega 70 50 9 56 7

% - ‘NT’

ADHD
Substance Disorders Tourette’s Psychosis

25
5 6 ?

30
7 2

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60 50 15 45 35

% - Lugnega 70 50 9 56 7

% - ‘NT’

ADHD
Substance Disorders Tourette’s Psychosis

25
5 6 3

30
7 2 ?

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60 50 15 45 35

% - Lugnega 70 50 9 56 7

% - ‘NT’ ? ? ? ? ?

ADHD
Substance Disorders Tourette’s Psychosis

25
5 6 3

30
7 2 2

?
? ? ?

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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source 60 50 15 45 35

% - Lugnega 70 50 9 56 7

% - ‘NT’ 25 12.5 1 25 1

ADHD
Substance Disorders Tourette’s Psychosis

25
5 6 3

30
7 2 2

5
7 1 1

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Outline
•Vignettes: four ‘typical’(?) cases

•How Diagnosis drives care decisions
•Digging deeper: is ‘all’ explained’ by ASD? •Understanding Evidence Based Practice in ASD •Differential / multiple diagnostic considerations •Maturational and developmental considerations •Family systems aspects of complex situations •DSM, and DMIC diagnostic systems •Planning & Reflective Process

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Maturational/ developmental considerations
•Adult - connecting with a life partner

and being productive •Adolescent - sexual drive and individuation. •School age child - competence and self esteem •Pre-k child managing body control and competing relationships among adults

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Outline
•Vignettes: four ‘typical’(?) cases

•How Diagnosis drives care decisions
•Digging deeper: is ‘all’ explained’ by ASD? •Understanding Evidence Based Practice in ASD •Differential / multiple diagnostic considerations •Maturational and developmental considerations •Family systems aspects of complex situations •DSM, and DMIC diagnostic systems •Planning & Reflective Process

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Family systems aspects
• The adult is expected to take care of himself

• The teen was available; mom wanted him to

be doing something productive and social , helping out and getting a 'job'. • The school aged child is expected to go to school and do his work • The Pre -K child is similarly expected to cooperate and join the group.

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Outline
•Vignettes: four ‘typical’(?) cases

•How Diagnosis drives care decisions
•Digging deeper: is ‘all’ explained’ by ASD? •Understanding Evidence Based Practice in ASD •Differential / multiple diagnostic considerations •Maturational and developmental considerations •Family systems aspects of complex situations •DSM, and DMIC diagnostic systems •Planning & Reflective Process

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DSM, and DMIC
• DSM: Pure disorders, definitive and effective

treatment. MDD, ADHD, OCD , etc. • What we do: find more factors, more diagnoses • Complex situations require complex approaches • DSM axes help us address multiple areas. • DMIC: Has even more axes .....

DSM – IV TR I – Major Diagnosis II – Character, Retardation

DMIC I – Primary Diagnosis

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II – Functional Emotional Developmental Capacities (FEDL)

III – Medical Problems
IV – Stress level V – Global Function

III – Regulatory-Sensory Processing Capacities
IV – Language Capacities V – Visuospatial Capacities

VI – Child-Caregiver and Family Patterns
VII - Stress VIII – Other Medical and Neurological Diagnoses

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DSM - IV TR Categorical - ‘Chinese menu’ ASD: social, language, interests

DSM - V Dimensional spectrum ASD: socialcommunication, interests

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But both categorical and dimensional views may be valid (Zimmerman 2012):
• After a certain threshold of number of symptoms of

borderline personality disorder there is little difference in overall functional impairment among patients • Supports categorical - e.g. ADOS (autistic, nonautistic, etc.) • But people with one symptom of borderline personality disorder are significantly impaired compared to those with no symptoms • Sub clinical - support for dimensional spectrum view e.g. FEDL Likert scale assessing each dimension

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Outline
•Vignettes: four ‘typical’(?) cases

•How Diagnosis drives care decisions
•Digging deeper: is ‘all’ explained’ by ASD? •Understanding Evidence Based Practice in ASD •Differential / multiple diagnostic considerations •Maturational and developmental considerations •Family systems aspects of complex situations •DSM, and DMIC diagnostic systems •Planning & Reflective Process

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Planning
•Brainstorming: diagnosis, causes or factors

at play •More brainstorming about what we might do •Prioritizing and combining to make sense for the family.
•Expect to adjust:

reflective process to

help us navigate better as we move forward

Reflective Parallel Process
• Colleagues support professionals
• who support parents & caregivers • who support people with challenges

Reflective means Non-Directive
• Avoid telling people what to do,
but help them problem solve – • creates confidence in one’s own competence to solve problems in everyday life and intervention* * This is like Tronick’s ideas of repair leading to confidence and ability to tolerate stress

Platinum Rule
• Treat others as you would like

them to treat others.
• A good listener treats you with respect so that

you have the support to be able to tolerate the natural stress of helping your child.

Good Listening (It’s not therapy – but it is very helpful)
• Look – at the person and how they seem to
be feeling

• Listen – to what the person is saying – what
are the main concerns?

• Learn – try to figure out how to support the
person in problem solving

(from Zero to Three)

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A Reflective Community Requires Nurturing
• There are always new challenges

• Nothing ever goes exactly as expected
• We rarely have the support and time we need

to think things through with others • When we do this, we save a lot of time and energy in the long run. • Make time – regular meetings

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Reflective Process: in the moment
• Humility: you do not have the ‘answer’

• Facilitate problem solving
• Wonder about the situation • Track the emotion, then and now • Statements vs. questions. • Empowering vs. dictating.

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Summary

1 think broadly - brainstorm 2 think practically - prioritize 3 nurture reflective process

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