The New Look: Old Ways of Looking at Autism vs. New Ways of Looking at Autism

by Michael John Carley Founder, GRASP and author, “Asperger’s From the Inside-Out” Brief History of Autism + Myths

Brief History of Autism + Myths

Potentially Redundant Charts

Brief History of Autism + Myths

Potentially Redundant Charts

Side Issues: Socialization, Sports, Families, Sex, Work, Disclosure, Politics & Self- Advocacy

Brief History of Autism + Myths

Potentially Redundant Charts

Side Issues: Socialization, Sports, Families, Sex, Work, Disclosure, Politics & Self- Advocacy

Closing

Brief History of Autism + Myths

Potentially Redundant Charts

Side Issues: Socialization, Sports, Families, Sex, Work, Disclosure, Politics & Self- Advocacy

Closing

Q & A

Setup: Let’s distinguish . . .

• Between functionality levels • That AS and Autism and PDD are all on the Setup: The World Today

• No significant social services • Nowhere near adequate school placements available • A plethora of butcherous clinicians • 1 in 88? • What’s out there for adults? A Brief History of Autism (or of a stigma) Dr. Leo Kanner—Autism 1943

• Inability to communicate verbally • Preference of objects to people • Disliking of breaks in routine • High intelligence Dr. Hans Asperger— 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

Asperger not translated into English until the early 1980’s by Lorna Wing The 1950’s

Kanner’s belief that intelligence lies within the autistic brain is eventually discounted (only today is it being revived)

Kanner starts to think that placements outside the home would be better for autistic children

1960’s-early 1970’s Bruno Bettelheim The Iconography of Autism: Bettelheimian Version

• Suggestion of bad mothering • Forced separation • Logical then to avoid the diagnosis of Autism • Impactful today (Sacks and grant) 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” • 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 — , , 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 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 The 1990’s - 2000’s

• 1998 - Andrew Wakefield and the Lancet

• 2003 - GRASP begins

• 2005 - begins (impact on ASA)

• 2006 - Other peer-run groups

• 2007 - New CDC Prevalence Numbers

Pro-Cure Research Other Peer-Run Organizations Groups and Blogs

(Very) Pro-Cure Vaccine Theory Organizations

Regional Parents’ Organizations

Spectrum-Friendly National Research Parents Organizations Organizations

Politics: Mixed Messages This is what I look like when I'm trying to relax, or zone out a little, or shut off vision so that I can hear what is going on around me. I have no doubt that someone could use this image to show the tragedy and despair inherent in autism . . . Black-and-white images such as these, and the captions that go along with them, are designed to create a reaction. Most often, disability organizations, run by non- disabled people, use them to elicit pity — and money, at the expense of the truth. Look at the autistic person in her own world, they say. Isn't it tragic? What I am doing in this photograph is no different than someone curling up with a good book to unwind after a long day . . . Some autistic people would even say that it's bad to publish pictures that look like this. Better to publish the ones that make us look like real people. Those are the better pictures.

I say that plays straight into the hand of people who think there's something wrong with the way we look.

Today 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 . . . And today? . . .

There’s GRASP, and Other Peer-Run Groups Setup: Myths

• Passionless • Humorless • No sexual appetite • We’re all great at math • Bullies are eventually punished by life Setup: Bullying’s New Look

• Not Just the Bullies • Bystanders, and the idea of complicity • The Teachers (The feelings of “He had it coming”) Setup: Myths

• Passionless • Humorless • No sexual appetite • We’re all great at math • Bullies are eventually punished by life • 65-85% Boys? Setup: Boys and Girls

• Eye Contact • Interest in Sports • Submissive Relationships as Adults “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. 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 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. Inflexibility. Focused more on the An inconvenience for routine task then the Need for those in contact with next person. Also, the routine. the individual. Can also sense of order caused lead to anxiety and/or by routine can be very Disliking of trauma in the individual calming, and can reduce change. when change is the anxiety caused by mandatory. living in a world that confuses you. “The New Look”

Critical Instructional/ Characteristic Interpretation Positive Int.

Problems with imagination— Varying degrees of May be may have played out inability towards most noticeably when indications of a imagination and the individual was a great, technical child, as a difficulty creative or flexible with “imaginative thinking. mind. play” “The New Look”

Critical Instructional/ Characteristic Interpretation Positive Int. Can be seen as Problems with May be “goofing off” or non-artistic indications of a not focused activities or great, creative enough on fields of study mind. serious matters.

“The New Look”

Critical Instructional/ Characteristic Interpretation Positive Int.

Says whatever comes into their head, unaware of The individual is The individual is the potential rude. honest. damage the statement might cause. “The New Look”

Critical Instructional/ Characteristic Interpretation Positive Int.

The individual has Penchant for The individual is something to say, interrupting another indicator that rude. social contact is indeed others. desired (and that desire needs to be encouraged). “The New Look” Critical Instructional/ Characteristic Interpretation Positive Int.

Cognitive awareness and Stimming: Individual appears loss in anxiety can help to Involuntary reflex broken, or can scare redirect some stims to actions such as other people who become more socially ’ accepted, although “stims” flapping the don t understand generally tend to stick hands or feet; the motivations around to some degree for rocking, or behind the life. But stims are harmful to no one, and are often an making noises. reactions. expression of pleasure. “The New Look”

Critical Instructional/ Characteristic Interpretation Positive Int. Difficulty in staying on a Individual is Individual may topic and thought of as impatient, or selfish. simply not be following the Can be due to a interested in the thread of the difficulty with topic. ongoing short-term memory conversation. “The New Look”

Critical Instructional/ Characteristic Interpretation Positive Int.

Easily duped by tricks, pranks, or scams, The individual is Is fooled easily. possibly causing great trusting and social and/or financial harm. This confusion loyal. adds to possible anger and stress overload. Socialization:

Do We Really Want To? Socialization:

Different Learning Styles

Visual Learner? Non-Visual Learner? Socialization:

Different Learning Styles

All autism? Special Ed? ? Mainstream? Socialization:

Common Connections Sports

• Obvious physical benefit + motor skills • Arena where certain emotions are appropriate (and where it is safe to apply them) • Notions of competition • Picnic Story • Confidence • No slight to the arts :-) Families

• Master’s Degrees in Neuroscience • Stigma of the aforementioned history • You don’t get a break from each other — Accumulated frustrations • Genetic nature Disclosure

• Who • How • When • Why The “Work Spectrum” The 9-5 office job

The Arts & The military University Life Sex

• Friendships first? • Bodies vs. minds • Watch the curriculums • Sexual pluralism • Porn: Cons and 1 pro • Someone has to teach them to . . . Politics

• The Vaccine Debate

• The Cure Debate

• Behavioral Therapies

• Research: What kind of research?

• DSM-5 “I know what’s going on with you, you’ve just got too many wires…” “No, doctor. My problem is that the wires aren’t insulated well enough.”

--- A 5-year old boy with AS “Failure” The biggest obstacle . . . …is that no one wants to please more than us.

And “wants to please,” will always be “can’t handle rejection” to some people. Two Wonderful Words:

1. “So” 2. “what” Because life is going to throw us some punches Temple Grandin Think of that first autistic to make the swim team, or the cheerleading squad, or who beat out someone for a job… Teach that sometimes its ok if someone doesn’t like you

Travel-train, and then travel

Give them realistic social skills and sexuality training

—New York Times, April 24, 2004 Our Makeup

• Gender • Race • Economic Background • Sexual Orientation • Neurological Makeup • Quality of Supports • Culture

Perspective

“Security is a superstition. It does not exist in nature. Life is either a daring adventure, or nothing.”

—Helen Keller Perspective

If you really want someone to change, then you have to change.

—Freud Thank you for listening!!!