This is the final version

It will be posted on circlestretch.com

Society Needs Diversity: Innovation, Globalization, Public Policy, and Finding a Niche for Everyone

ICDL Annual Conference Montclaire, NJ Saturday, November 17th, 2012 Josh Feder, MD

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

Because our job is to take it apart and look at it

Outline: From hate to healing

Zeitgeist: Middle Earth Hate gets Personal Clinical Case - acclimate or accommodate? Diversity is central to Innovation Diversity in Healthy International Relations Diverse Expertise: The Wisdom of Crowds Neurodiversity as Human Necessity Applications: Practical Diversity Accommodations, Evidence Based Practice, and World Peace Denouement: The Fault in Our Stars

our lovely world

the not-so-good things

Zeitgeist: Middle Earth

It s a wonderful world But the problems are real: war, eco-loss, etc. What can we do to help? Be honest, make no assumptions, dont take things personally, and try our best* To start, we need to understand the development of hate and empathy *The Four Agreements - Don Miguel Ruiz

Caution: Some of this material is upsetting

Recent events, including the hurricane and the events in the middle east, have shifted my tone. The issues are more immediate and dire. My hope is that, as we do in difficult times, we can manage the pain and move forward through:

Use of a symbolic framework (Tolkein did this) Understanding empathy and diversity Practical ideas for addressing our challenges

Recent travel pictures, theme music, etc. pretty much skipping them

missile command November 2012

1978: obsessive,failing symbolic (no respawning you always, eventually lose)

Hate Gets Personal, So Does Empathy

The wrong trope Baron-Cohen: empathy is inside the group Gordis: the development of empathy requires personal experience Greenspan: empathy develops in the context of a flow of interaction between caregiver and child, reading and responding to each others cues over time

Tronick: messy interactions

from infancy there is a natural, messy process of break and repair [of engagement] founded on the real differences in perspective between infant and parent there is a break, and then there is repair, over and over this is necessary for emergence of a sense of self and for resilience confidence in ones own competence to repair the breaks in engagement (Georgias case showed this with an adult yesterday) Differences are necessary for development Clinical work: in the course of life differences also cause pain

Diversity in stark relief Clinical Case: Lupus

Depression, not exactly Chronically suicidal Medical diagnosis, and exacerbated disability The Dilemma of Belonging: Accommodate or Acclimate (life only on lifes terms)? Finding kinsmen and perhaps a way forward Sharing an entirely different experience of the world, with so much to offer As it turns out, we need these different points of view to meet to challenges of society and technology

COLUMBIAs WING

Diversity of Thinking is Central to Innovation, Problem Solving, and Critical Decision Making
We need these different points of view in solving the problems of technology and society The Challenger and Columbia Disasters: NASA Culture, Groupthink, The culture of power point Lesson: We need local information, uncensored Steve Jobs at Apple: was he one driving force, or were there many people driving forward and convincing Jobs until he took things on as his own ideas Start Up Nation: Dan Senor - when people pipe up, everything is possible We must seek all voices to support critical decision making and innovation This is also true in international relations

Gordis: Diversity is a part of healthy international relations

Imperialism, war, hatred: all suppress freedom Universalism (e.g. The European Union) is not necessarily an ideal solution: threatens to suppress creativity, erases the unique cultural identity of a nation. (Note loss of 4000/ 10000 languages over the past century, and loss of another 1000 expected in the next century) Respect for Cultural Diversity and Nationalism do not equal Imperialism: liberal democracies do not go to war against each other.

Think DIR
We support the emergence and elaboration of the ideas to help another build social-emotional capacities and problem solving Tolerance, diversity, and freedom are the minimal elements needed for countries to exist in a diverse international community. Human communities need diversity moreover, independent thinking is built into communal problem solving.

Universalism at work.

Communal Problem Solving: Guess my weight and take me home!

Diverse Expertise: The Wisdom of Crowds- Surowiecki

Many people together can create a powerful form of artificial-artificial intelligence Requires independence of thought and diversity of people (many people are better than one expert opinion)

Problems solved by groups

the weight of a cow, the location of a lost sub the shapes of protein molecules in everyday life: complexity of traffic flow (and note the problems caused by less expert drivers)

Group Exercise: Crowd-Sourcing

Close your eyes Raise your hands to the percentage you think is about right Our volunteer will eyeball the result

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) 19101917
This is the study we are comparing with our intuition. Well just do a couple of these Then well 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 Tourettes Psychosis ?
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Diagnosis Depression lifetime Depression, recurrent Bipolar Disorder Anxiety Disorders OCD

% - crowd source (ICDL)

% - Lugnega 70 50 9 56 7

% - NT 25 12.5 1 25 1

ADHD
Substance Disorders Tourettes Psychosis

30
7 2 2

5
7 1 1
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Diagnosis Depression lifetime Depression, recurrent

% - crowd source (UCSD) 60 50

% - Lugnega 70 50 9 56 7

% - NT 25 12.5 1 25 1

Bipolar Disorder 15 Anxiety Disorders OCD 45 35

ADHD
Substance Disorders Tourettes Psychosis

25
5 6 3

30
7 2 2

5
7 1 1
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Neurodiversity as Human Necessity: What Make Us Human?

Diversity in thinking is built into communal problem solving. It is actually built into our genetic code. Anthropogeny is the study of how we come to be human (CARTA at UCSD free webinars) A difference only in gene expression: Human vs. Chimps; dino-chickens in development Close enough cousins: mouse models in medicine, testing fruit flies for medication for Fragile X

dino-chicken

Anthropogeny: Genetic Coding for Social-Emotional Development

Genes code for mirror neurons that track what other people do and allow us to imitate. Imitation leads to affiliation: as we see and we do like those around us, we tend to group with those people Affiliation leads to identification an extremely potent psychological force in which we take on the characteristics of the powerful people around us (parents, teachers, mentors, even oppressors Stockholm Syndrome & Patty Hearst) Identification leads to empathy and social knowledge (right sided) and communication and language (left sided).

identification

Natural Genetic Variation in Social-Emotional Development

So we have these genes that code for social emotional function. And we know that genes vary in their transmission and character from generation to generation. Some genes vary more than others, e.g., hair color varies more than whether or not you will grow a heart. Back to Middle Earth: the heights of Hobbits, while all short, presumably vary in a normal distribution about a mean or average height. However, there is less variation in whether they have hairy feet they all have hairy feet. Back to, anthropogeny, i.e., what is unique to actual humans: large brain size; intense drive to imitate, which allows our species to learn from others; sophisticated social abilities; sophisticated technical abilities. These areas make us human and as it happens they are all extremely variable in their genetic allelic construction.

Patterns of Genetic Variation

Numbers of genes: too many CGG repeats in Fragile X; Down's Syndrome trisomy 21. Too few genes in deletion syndromes. Single specific spontaneous changes can create ASD. Usually severe and the person does not have kids and pass on that change. More often ASDs involve a number of genes that affect those highly human qualities. Some people have moer trouble reading social cues but are more able to focus on detail, range in severity along the ASD spectrum. For others the same genes vary in opposite directions, toward manic, psychotic, and borderline personality symptoms. We typically see both poles of symptoms and syndromes running in families, with the easy variability of those genetic alleles leading to natural neurodiversity.

Neurodiversity is Necessary
This may explain the growing number of studies showing the same rates of broadly defined ASDs in older people as in children, roughly 1/100. Our ASD epidemic is more and more seen as a recognition of the true rate of this kind of natural genetic variation. Temple Grandin says it best when she talks about how if we were all the same we would still be chatting at each other in caves with no technology. This variability has evolutionary value or it would have been dropped over the 6 million or so years that hominids have been developing (Dawn of Humankind).

Applications: Practical Diversity

Accommodations in everyday life Evidence Based Practice research and intervention that leverages freedom of thought toward more effective action World Peace

Accomodations: Neurodiversity - Armstrong

Disabled or gifted? Often depends largely on when and where you were born, i.e. what kind of support you have. Finding or creating a niche is key to adaptive function and, notably, can create (positive ) brain changes. Job ideas that embrace neurodiversity: Marine point men with ADHD, computer engineers on the Spectrum, senstive and perceptive writers with mood disorders, etc. re dyslexia, anxiety)

Accomodations: Neurodiversity - Armstrong

Working with intellectual ranges, schizophrenia Inclusion in education (see also Paula Kluth) Combating 'ableism i.e., the bias that only the able-bodied should be selected for jobs, promotions, etc. Ari and Morton will talk more about these things. Deciding how to help requires good research, appropriately applied.

Evidence Based Practice (EBP):

We want to know what interventions might help, but we typically do not know for sure. EBP helps us wend our way toward better intervention. EBP combines relevant research with clinical judgment to provide families with choices so that they can make informed consent decisions based on their own family culture and values. This in contrast to Evidence Based Treatment (EBT) that uses a study to dictate intervention, or clinical experience alone without adequate basis in research.

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Relevant Research
Beyond traditional randomized controlled efficacy trials (RCTs) that use pure diagnostic populations with narrow interventions and are often aimed at short term, process variables (e.g., IQ) vs. outcome variables (got a job). EBP includes strategies in addition to RCTs to address shortcomings of RCTs, e.g., efficiency studies, survival studies, single case studies, and other strategies
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We are doing the research!

Solomon, et. al BRIDGE - me, Marilee, Aubyn, et. al. York MEHRI thanks to Eunice and Amanda! And Devin, Jim, Stuart and Sharon Alexander and the Unicorn Foundation! At ICDL we are joining the growing world of innovative, diversified research.

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Be a part of it
become a grad student in our PhD program Join our research webinars!

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ICDL Grad school faculty and students

Clinical Judgment
Implicit, rapid pattern recognition Gained over time (10,000 hrs.) Built in biases, e.g. low risk high gain (lottery) thinking and high risk outcomes leading to harm-avoidance. Powerful when guided by a reflective process that values independent, innovative, iterative thinking (as in good DIR/Floortime).
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Family Culture & Values

Family is typically the most powerful force in the system. If an intervention is thrust at a family and doesnt fit the family, it is unlikely to help effort and resources are wasted. We never really know what is best, and so, ethically, families must decide what is best, based on true informed consent.
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Evidence Based Practice

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Be a part of it
Many or most treatments and interventions are heavily impacted by economic forces WE MUST ADVOCATE for Choice in treatment Come tonight to hear more from Jim Lantry (who knows you might win lunch with Dan Siegel or a Feder clutch purse!)

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this clutch could be yours!

World Peace
Debiasing: speaking truth, developing interdependent relationships (economic, etc.) Back to the Four Agreements: be honest, dont make assumptions, dont take things personally, and try our best

Global Interdependency
Greenspan The Development of the Ego - nature and nurture combine in development of groups as well as people. Greenspan & Shanker: Global Interdependency, The First Idea safety, shared sense of humanity, presymbolic affective (dependency, fear, assertive, aggressive, etc.), symbolic From determinism (polarized thinking) toward interdependency. More diverse populations leads to more reflective integration demanded by the dynamic. Policy: recognize global interdependence; never intimidate; patient persistence; support basic needs, safety, and provisions for conflict resolution and reflective institutions. More on this tomorrow from Gerry Costa!

Feder, Shanker, et. al. moving forward Belfast and Babies: healing over generations
Tronick revisited, in parallel reflective process Supporting caregivers from early on to support their children in the development fo Functional Emotional Developmental Capacities. Join us? Email me! jdfeder@pol.net

Diversity Denouement: The Fault in Our Stars - Green

Cancer in teens: a population of people, genetically diversified to have cancer and have a very high mortality early in life. Contra-maslovian? Pseudo-contra-maslovian? Not the wrong trope, but a different trope

'I wish it need not have happened in my time,' said Frodo. So do I,' said Gandalf, 'and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.

Recap: What we can do

Advocacy: come tonight! Research: join the ICDL effort! World peace: join me and Stuart!