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, don’t 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. â&#x20AC;&#x201C; pretty much skipping them
â&#x20AC;&#x2DC;missile commandâ&#x20AC;&#x2122; November 2012
1978: obsessive,failing symbolic (no respawning â&#x20AC;&#x201C; you always, eventually lose)
Hate Gets Personal, So Does Empathy
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 one’s own competence to repair the breaks in engagement (Georgia’s 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 life’s 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
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 workâ&#x20AC;Ś.
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’
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. • We’ll just do a couple of these • Then we’ll look at what the numbers are in the neuro-typical population
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
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).
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.
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 55
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.
Be a part of it â&#x20AC;˘ become a grad student in our PhD program â&#x20AC;˘ Join our research webinars!
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). 59
Family Culture & Values • Family is typically the most powerful force in the system. • If an intervention is thrust at a family and doesn’t 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. 60
Evidence Based Practice
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!)
this clutch could be yours!
World Peace • Debiasing: speaking truth, developing interdependent relationships (economic, etc.) • Back to the Four Agreements: be honest, don’t make assumptions, don’t 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 â&#x20AC;˘ Tronick revisited, in parallel reflective process â&#x20AC;˘ Supporting caregivers from early on to support their children in the development fo Functional Emotional Developmental Capacities. â&#x20AC;˘ Join us? Email me! firstname.lastname@example.org
Diversity Denouement: The Fault in Our Stars - Green
'I wish it need not have happened in my time,' said Frodo. â&#x20AC;&#x2122;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.â&#x20AC;&#x2122;
Recap: What we can do • Advocacy: come tonight! • Research: join the ICDL effort! • World peace: join me and Stuart!