Old Ways of Looking at Autism vs. New Ways . The New Look at the Needs of Teens and Adults on the Autism Spectrum Presented by Michael John Carley Founder, GRASP; School Consultant; Consultant for Disability Inclusive Culture, New York University Author: “Asperger’s From the Inside-Out,” “Unemployed on the Autism Spectrum,” “The Book of Happy, Positive and Confident Sex for Adults on the Autism Spectrum…and Beyond!” & the former Huffington Post column, “Autism Without Fear” PDFs??? Email me at [email protected] Contact me through www.michaeljohncarley.com Or Twitter @mjcarley Setup—”The Situation on the Ground” Brief History of Autism + Myths Potentially Redundant Charts Side Issues: Socialization, Families, Schools, Sports, Romance, Sex, Travel, Work, Closing (Perspective) Q & A The Situation on the Ground • The complexity of the Spectrum + DSM-5 The Situation on the Ground • The complexity of the Spectrum + DSM-5 • Nowhere near adequate school placements available The Situation on the Ground • The complexity of the Spectrum + DSM-5 • Nowhere near adequate school placements available • A plethora of butcherous clinicians The Situation on the Ground • The complexity of the Spectrum + DSM-5 • Nowhere near adequate school placements available • A plethora of butcherous clinicians • 1 in 54? The Situation on the Ground • The complexity of the Spectrum + DSM-5 • Nowhere near adequate school placements available • A plethora of butcherous clinicians • 1 in 54? • What’s out there for adults? The Situation on the Ground • The complexity of the Spectrum + DSM-5 • Nowhere near adequate school placements available • A plethora of butcherous clinicians • 1 in 54? • What’s out there for adults? • We have “Problems” Albert Einstein, Isaac Newton, Henry Cavendish, Thomas Jefferson, Vincent van Gogh, Ludwig van Beethoven, Wolfgang Amadeus Mozart, Emily Dickinson, Ludwig Wittgenstein, Alan Turing, Hans Christian Anderson, Herman Melville, William Butler Yeats, Lewis Carroll, Arthur Conan Doyle, Erik Satie, Bela Bartok, George Orwell, Patricia Highsmith, Andy Warhol, Glenn Gould, Alfred Kinsey, Bertrand Russell, Immanuel Kant, Piet Mondrian, Wassily Kandinsky, Barbara McClintock, Paul Erdös, Nikola Tesla, Sophie Germain, Dian Fossey, Andy Kaufman, Julia Bowman Robinson, Joseph Cornell, Benedict de Spinoza . Pr o-Cur e Resear ch Other Peer-Run Or ganizations Gr oups and Blogs (Very) Pr o-Cur e Vaccine Theory Or ganizations Regional Par ents’ Or ganizations Spectrum-Friendly National Resear ch Par ents Or ganizations Or ganizations Figurative Fights (“The Politics”) • Language (ex: “Cure,”) Figurative Fights (“The Politics”) • Language (ex: “Cure,”) • The Vaccine Debate Figurative Fights (“The Politics”) • Language (ex: “Cure,”) • The Vaccine Debate • Aversives Figurative Fights (“The Politics”) • Language (ex: “Cure,”) • The Vaccine Debate • Aversives • Research? What kind of research? Figurative Fights (“The Politics”) • Language (ex: “Cure,”) • The Vaccine Debate • Aversives • Research? What kind of research? • First-ever Congressional Hearings on Autism A Brief History of Autism (or of a stigma) Dr. Leo Kanner—Autism 1943 • Inability to communicate verbally Dr. Leo Kanner—Autism 1943 • Inability to communicate verbally • Preference of objects to people Dr. Leo Kanner—Autism 1943 • Inability to communicate verbally • Preference of objects to people • Disliking of breaks in routine Dr. Leo Kanner—Autism 1943 • Inability to communicate verbally • Preference of objects to people • Disliking of breaks in routine • High intelligence Dr. Hans Asperger— Asperger Syndrome, 1944 • Inability to pick up non-verbal communication Dr. Hans Asperger— Asperger Syndrome, 1944 • Inability to pick up non-verbal communication • Passionate interests Dr. Hans Asperger— Asperger Syndrome, 1944 • Inability to pick up non-verbal communication • Passionate interests • Motor skills deficits Dr. Hans Asperger— Asperger Syndrome, 1944 • Inability to pick up non-verbal communication • Passionate interests • Motor skills deficits • Oddly exhibited use of the spoken word Before the 40’s? Kanner’s work spreads Asperger’s work does not Kanner’s work spreads Asperger’s work does not Asperger not translated into English until the early 1980’s by Lorna Wing 1960’s-early 1970’s Bruno Bettelheim The Iconography of Autism: Bettelheimian Version • Suggestion of bad mothering The Iconography of Autism: Bettelheimian Version • Suggestion of bad mothering • Highly encouraged separation The Iconography of Autism: Bettelheimian Version • Suggestion of bad mothering • Highly encouraged separation • Logical then to avoid the diagnosis of Autism Late 1970’s and 1980’s “Why do you want to put a label on him?” Anti-Labelism The Iconography of Autism: Anti-Labelist Version • Intentionally vague description of all diagnoses as “special” The Iconography of Autism: Anti-Labelist Version • Intentionally vague description of all diagnoses as “special” • By keeping the aura surrounding the individual undefined, no one could prescribe anything harmful to the family The Iconography of Autism: Anti-Labelist Version • Intentionally vague description of all diagnoses as “special” • By keeping the aura surrounding the individual undefined, no one could prescribe anything harmful to the family • Avoidance of stigma? So did these two eras really contradict each other as much the anti-labelists hoped? • Both prevented individuals from having a say in their care— Denying self-advocacy, if not the concept altogether • Demonization of diagnosis itself • Both attached negative iconography to words like “autism” and “Asperger’s” The seeds of where we are today began in the 1960’s • First autobiographical accounts — Donna Williams, Temple Grandin, and Thomas McKean challenged the idea that all autistics were incapable of communication The seeds of where we are today began in the 1960’s • Clinicians Like Sacks who brought the world’s attention to the beautiful works by autistics The 1990’s • 1993-Don’t Mourn for Us The 1990’s • 1993-Don’t Mourn for Us • 1994-The DSM-IV The 1990’s • 1993-Don’t Mourn for Us • 1994-The DSM-IV • Late 1990’s-More books by people like Liane Holliday-Willey, Jerry Newport, Stephen Shore. Plus, 2nd and 3rd books The 1990’s • 1993-Don’t Mourn for Us • 1994-The DSM-IV • Late 1990’s-More books by people like Liane Holliday-Willey, Jerry Newport, Stephen Shore. Plus, 2nd and 3rd books • Opinions, not just experiences And they dispelled the notion that one size fit all Myths Since Dispelled • Passionless Myths Since Dispelled • Passionless • Humorless Myths Since Dispelled • Passionless • Humorless • No sexual appetite Myths Since Dispelled • Passionless • Humorless • No sexual appetite • We’re all great at math Myths Since Dispelled • Passionless • Humorless • No sexual appetite • We’re all great at math • Bullies are eventually punished by life Myths Since Dispelled • Passionless • Humorless • No sexual appetite • We’re all great at math • Bullies are eventually punished by life • Happiness = ability to communicate Myths Since Dispelled • Passionless • Humorless • No sexual appetite • We’re all great at math • Bullies are eventually punished by life • Happiness = ability to communicate • 65%-85% boys? For real? Setup: Boys and Girls • Eye Contact Setup: Boys and Girls • Eye Contact • Interest in Sports Setup: Boys and Girls • Eye Contact • Interest in Sports • Submissive Relationships as Adults “The New Look” Critical Instructional/ Characteristic Interpretation Positive Int. “The New Look” Critical Instructional/ Characteristic Interpretation Positive Int. Intense absorption in a topic or field of interest. “The New Look” Critical Instructional/ Characteristic Interpretation Positive Int. Intense Individual is absorption in a obsessed, and is driven further into topic or field of this absorption by interest. anxiety and stress. “The New Look” Critical Instructional/ Characteristic Interpretation Positive Int. Intense Individual is obsessed, and is absorption in a Individual is driven further into passionate. topic or field of this absorption by interest. anxiety and stress. “The New Look” Critical Instructional/ Characteristic Interpretation Positive Int. Professorial, mono-toned manner of speaking. “The New Look” Critical Instructional/ Characteristic Interpretation Positive Int. Professorial, Stilted awkwardness mono-toned that is off-putting to manner of others, often preventing further speaking. steps in a potential relationship. “The New Look” Critical Instructional/ Characteristic Interpretation Positive Int. Focused on Professorial, Stilted awkwardness being clear in mono-toned that is off-putting to what is being manner of others, often preventing further said by utilizing a speaking. steps in a potential strength, text. relationship. “The New Look” Critical Instructional/ Characteristic Interpretation Positive Int. Discomfort or inability at small talk. Sees no logic in it. “The New Look” Critical Instructional/ Characteristic Interpretation Positive Int. Discomfort or inability at Off-putting and small talk. Sees impolite. no logic in it. “The New Look” Critical Instructional/ Characteristic Interpretation Positive Int. Discomfort or inability at Off-putting and Gets to the small talk. Sees impolite. point. For many, no logic in it. this is very refreshing. “The New Look” Critical Instructional/ Characteristic Interpretation Positive Int. Problems with imagination— may have played out most noticeably when the individual was a child, as a difficulty with “imaginative