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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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 .....
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DSM – IV TR
DMIC
I – Major Diagnosis
I – Primary Diagnosis
II – Character, Retardation
II – Functional Emotional Developmental Capacities (FEDL)
III – Medical Problems
III – Regulatory-Sensory Processing Capacities
IV – Stress level
IV – Language Capacities
V – Global Function
V – Visuospatial Capacities VI – Child-Caregiver and Family Patterns VII - Stress VIII – Other Medical and Neurological Diagnoses
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DSM - IV TR DSM - V Categorical - ‘Chinese Dimensional menu’ spectrum ASD: social, language, ASD: socialinterests communication, 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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