The New Look: Old Ways of Looking at Autism vs. New Ways ... · • Motor skills deficits ... Aspergerʼs work does not Asperger not translated into English until the early 1980ʼs

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 autism spectrum

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— 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

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 — 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

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 - Autism Speaks begins (impact on ASA)

• 2006 - Other peer-run groups • 2007 - New CDC Prevalence Numbers

Pro-CureResearch

Organizations

(Very) Pro-CureVaccine TheoryOrganizations

Other Peer-RunGroups and Blogs

Regional Parents’Organizations

Spectrum-FriendlyResearch

Organizations

National Parents

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”

Characteristic Critical

Interpretation Instructional/ Positive Int.

Intense absorption in a topic or field of interest.

Individual is obsessed, and is driven further into this absorption by anxiety and stress.

Individual is passionate.

“The New Look”

Characteristic Critical Interpretation

Instructional/ Positive Int.

Professorial, mono-toned manner of speaking.

Stilted awkwardness that is off-putting to others, often preventing further steps in a potential relationship.

Focused on being clear in what is being said by utilizing a strength, text.

“The New Look”



Discomfort or inability at small talk. Sees no logic in it.

Off-putting and impolite.

Gets to the point. For many, this is very refreshing.

“The New Look”



Inflexibility. Need for routine. Disliking of change.

An inconvenience for those in contact with the individual. Can also lead to anxiety and/or trauma in the individual when change is mandatory.

Focused more on the routine task then the next person. Also, the sense of order caused by routine can be very calming, and can reduce the anxiety caused by living in a world that confuses you.

“The New Look”



Problems with imagination— may have played out most noticeably when the individual was a child, as a difficulty with “imaginative play”

Varying degrees of inability towards imagination and creative or flexible thinking.

May be indications of a great, technical mind.

“The New Look”



Problems with non-artistic activities or fields of study

Can be seen as “goofing off” or not focused enough on serious matters.

May be indications of a great, creative mind.

“The New Look”



Says whatever comes into their head, unaware of the potential damage the statement might cause.

The individual is rude.

The individual is honest.

“The New Look”



Penchant for interrupting others.

The individual is rude.

The individual has something to say, another indicator that social contact is indeed desired (and that desire needs to be encouraged).

“The New Look”



Stimming: Involuntary reflex actions such as flapping the hands or feet; rocking, or making noises.

Individual appears broken, or can scare other people who don’t understand the motivations behind the reactions.

Cognitive awareness and loss in anxiety can help to redirect some stims to become more socially accepted, although “stims” generally tend to stick around to some degree for life. But stims are harmful to no one, and are often an expression of pleasure.

“The New Look”



Difficulty in staying on a topic and following the thread of the ongoing conversation.

Individual is thought of as impatient, or selfish. Can be due to a difficulty with short-term memory

Individual may simply not be interested in the topic.

“The New Look”



Is fooled easily.

Easily duped by tricks, pranks, or scams, possibly causing great social and/or financial harm. This confusion adds to possible anger and stress overload.

The individual is trusting and loyal.

Socialization:

Do We Really Want To?

Socialization:

Different Learning Styles

Visual Learner? Non-Visual Learner?

Socialization:

Different Learning Styles

All autism? Special Ed? Inclusion? 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 Arts & University Life

The military

The 9-5 office job

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!!!

Documents

The New Look: Old Ways of Looking at Autism vs. New Ways ... · • Motor skills deficits ... Aspergerʼs work does not Asperger not translated into English until the early 1980ʼs