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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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0

1

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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