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6/2/2016
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Celebrating the Culture of Autism: Role Models, Real Lives &
Relationships
By Valerie Paradiz, PhD
I am a person with autism
Diagnosis at 40
Depression
Parent of Elijah
Diagnosis at age 3
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Let’s back up
Elijah as a child
Intensive support needs
Seizure disorder
Sensory challenges
Early intervention
Shared stims & special interests
Family values and culture of autism
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The path to community
“Unwitting Aspie”
Personal transition
Autism Network International
AUTASTICS
GRASP
NYU Hospital
Autism Society meetings
Role models
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Elijah’s Cup
Name that AutieAnd name that deep interest too!
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Whose Culture?
Andy Kaufmann
American Comedian
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Andy Warhol
American Visual Artist
Albert Einstein
German Physicist
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Alexander Graham Bell
American Inventor
Emily Dickinson
American Poet
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Vincent van Gogh
Dutch Painter
Franz Kafka
Czech Writer
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Henry David Thoreau
American Philosopher
Howard Hughes
American Inventor/Engineer
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Glenn Gould
Canadian Pianist
Jane Austen
English Novelist
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Thomas Jefferson
American Statesman
Ludwig Wittgenstein
Austrian Philosopher
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Dan Aykroyd
American Comedian
H.P. Lovecraft
American Sci‐fi Writer
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Isaac Asimov
American Sci‐fi Writer
Isaac Newton
English Scientist/Philospher
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Yayoi Kusama
Japanese Visual Artist
“While all of you were at the cocktail party, we were busy inventing the wheel.”
Temple Grandin
Recognizing Our SharedCultural Values
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Relationships are impacted by our
Social‐communication differences
Sensory differences
Deep interests
The Crux of the Matter
The path to community
Professional transition ASPIE School
NYU Asperger Institute
ISA® Programs
Autistic Global Initiative
Autism Speaks
Simons Foundation: Spectrum News
Capacity building globally
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Self‐Advocacy and Relationships
Self‐Advo
cacy
Employment
Quality of Life
Education
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Self‐Advocacy
Self‐Determination
Quality of Life
What is Self‐Advocacy?
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3 Steps of Self‐Advocacy
1. Self‐awareness
2. Advocacy plan + disclosure
3. Implementation
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3 Self‐Advocacy Steps
1. Self‐Awareness
2. Advocacy plan + disclosure
3. Implementation
3 Indicators of Self‐Advocacy
1. Self‐Awareness
2. Competence
3. Autonomy
‐ adapted from Ryan and Deci
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1. Self‐Awareness
Knowing that one needs to advocate for something and what it is
2. Competence
Having tools to advocate for oneself, such as a script or a sensory support (sunglasses, earplugs) and knowing how to use them
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3. Autonomy
Initiating advocacy on one’s own behalf, independent of prompts or cues
5 Arenas of Self‐Advocacy
1. Sensory & environmental
2. Social
3. Disclosure
4. Strengths & interests
5. Civil rights & entitlements
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Effective and ineffectiveself‐advocacy
1. Advocating for Sensory Needs
Becoming aware of one’s own self‐regulation and sources of comfort
Understanding how to advocate for environmental accommodations
Advocating for environmental accommodations in novel situations or settings
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2. Advocating for Social Needs
Becoming aware of one's social tendencies, including propensity for withdrawal, overload, shutdown
Communicating social preferences and needs
Advocating for social accommodations in novel situations or settings
3. Understanding Disclosure
Educating others about one's way of being or condition (cross cultural communication)
Assessing situations to determine how to disclose (full or partial)
Disclosure, particularly as safety or self care
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4. Advocating with Strengths & Interests
Identifying one's own strengths and focused interests
Using strengths and interests to support one's community, employment, social or learning experiences
Strengths and interests as a foundation for relationships
5. Understanding Civil Rights & Entitlements
Knowing rights under IDEA, ADA or other relevant legislation
Participation in the IEP or adult services meeting
Understanding when to assert one's legal or civil rights
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Building Relationships
The ISA® Curriculum
ISA® Indicators & Skills Assessment
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Assessment
Uses of the ISA Assessment
To gather baseline data on self‐advocacy ability
To target IEP, ISP, treatment or other program goals for an individual
To measure progress on self‐advocacy goals
To measure outcomes (after completion of the ISA curriculum, a program, etc.)
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Implementing the Assessment
15 survey questions 3 indicators x 5 skill areas = 15
Data collection Self report
1‐3 adaptability scale
Adaptability Scale
1‐3 scale 3 = No Answer (not adaptive) 2 = Answered, but not in context to questions (adaptive)
1 = Answered in context to question (highly adaptive)
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Identifying ISP Goals & Benchmarks
Using the ISA Indicators & Skills Assessment Survey
Self‐Awareness Scale
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Competence Scale
Autonomy Scale
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ISA Sensory Scan®
Autism & Sensory Processing
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Person with autism
Person withoutautism
Zone of behavioralorganization
Zone of behavioraldisorganization
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ISA Sensory Scan® Worksheet
Advocacy Scripts
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Advocacy Script Worksheet
There exists a direct relationship between sensory needs and the ability to participate in social relationships.
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ISA Social Scan®
ISA Social Scan® Worksheet
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Disclosure as a form of cross‐cultural communication
Disclosing something intimate about oneself increases understanding and empathy
The information that is shared is tailored depending upon to whom one is disclosing and the level of disclosure
Disclosure
Effective Communication
Communicate in a way that permits others to hear and to listen
Invites others to interact
Sets a foundation of understanding
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When sensory challenges impede the building of relationships
Removing sensory barriers to participation allows active engagement with the social world
Sensory experiences can affect understanding of the environment or of the actions of others
The ISA Sensory Scan
Social differences act as obstacles to participation in daily life
Understanding one’s own social differences helps to produce change
Social self‐advocacy educates others as to one’s social needs and preferences
The ISA Social Scan
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Keys to Improved Relationships
Self‐Awareness and Effective Communication